tag:blogger.com,1999:blog-51335111945926312042024-03-06T12:00:50.947-08:00Asbestos - Living with Mesothelioma in Australia Louise (Lou) WilliamsMy personal journey battling MesotheliomaAnonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.comBlogger172125tag:blogger.com,1999:blog-5133511194592631204.post-72981266102203211722016-09-17T23:19:00.000-07:002016-09-17T23:19:51.020-07:00Lou Williams back on Keytruda after break of 6 months!Lou's email address: eradicateasbestos@gmail.com<br />
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Hi all<br />
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Apologies for not writing a blog for a few weeks, I have not been able to actually sit at our main computer up straight and write for any length of time, so have just been sitting in a comfy recliner chair and using my mobile ph.<br />
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<b><u>Update on my petition to fast track Keytruda on to PBS for Mesothelioma.</u></b><br />
<b><u>(Please keep signing and sharing petition)</u></b><br />
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https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug<br />
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<span style="background-color: white; color: #363135; font-family: "Change Calibre", "Helvetica Neue", Helvetica, Arial, Tahoma, sans-serif; font-size: 2.44141rem;">Lou Williams back on Keytruda after break of 6 months!</span><br />
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<span class="" style="box-sizing: border-box; font-weight: bolder;">Lou (Louise) Williams</span><div class="type-weak type-ellipsis" style="box-sizing: border-box; color: #737273; overflow: hidden; text-overflow: ellipsis;">
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<span class="type-no-wrap type-uppercase type-weak" style="box-sizing: border-box; color: #737273; text-transform: uppercase; white-space: nowrap;">SEP 10, 2016 — </span>Hi, March 2015 I was on death's door. With a couple of weeks of living on oxygen 24/7, morphine, 42 kilos, red blood cells stopped producing needing blood transfusions, appetite non existent, body shutting down fast and bed ridden.<br style="box-sizing: border-box;" />At a cost to us, I was given a lifeline to Keytruda. It brought me back to good health within 3 months, weight improved, appetite returned, no need for oxygen or high morphine meds giving me excellent quality of life and my life back! Tumours shrunk significantly and fluid decreased in peritoneal and pleural mesothelioma.<br style="box-sizing: border-box;" />I continued on Keytruda infusions every 3 weeks for 1 year. <br style="box-sizing: border-box;" />I had a scan end Feb 2016 showing 2 nodules growing inside chest wall. As my immune system was high thanks to Keytruda my oncologist Dr Allan Zimet took me off Keytruda to hit these nodules with new chemo Vinoralbine combined with carboplatin. Unfortunately I had a severe reaction to the chemo steroid drug dexamethasone on this new chemo regime and build up of it in my body over 13 yrs of treatment. Basically I went into a coma at home and was rushed to hospital where it was a life and death situation. I pulled through (again) learning to eat, walk and get back to quality of life. This caused my pancreas to shut down and me becoming a diabetic type 1 injecting daily.<br style="box-sizing: border-box;" />I had 3 mths of the chemo minus steroid dexamethasone and had scan end of July showing this chemo did zilch and tumours now on rise inside chest wall and tumour on liver growing.<br style="box-sizing: border-box;" />After 6 mth break since finishing Keytruda I am now back on 3 weekly infusions to shrink these little buggars! I will never never never give up!</div>
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<span class="fwn fcg" style="color: #90949c;"><span class="fwb fcg" data-ft="{"tn":";"}" style="font-weight: bold;"><a data-hovercard="/ajax/hovercard/user.php?id=1173576756&extragetparams=%7B%22fref%22%3A%22nf%22%7D" href="https://www.facebook.com/Linda.Reinstein.ADAO?fref=nf" style="color: #365899; cursor: pointer; text-decoration: none;">Linda Reinstein</a> </span></span><span class="fsm fwn fcg" style="color: #90949c; font-size: 12px;"><a class="_5pcq" href="https://www.facebook.com/Linda.Reinstein.ADAO/posts/10208873879102277" style="color: #90949c; cursor: pointer; text-decoration: none;" target="">10 September at 20:23</a></span><span aria-hidden="true" role="presentation" style="color: #90949c; font-size: 12px;"> · Linda kindly published my recent Global Ban Asbestos Network (GBAN) blog.</span></h5>
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Catch up with <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=602012895" href="https://www.facebook.com/lou.williams.714" style="color: #365899; cursor: pointer; text-decoration: none;">Lou Williams</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=158371317516896" href="https://www.facebook.com/gbanAsbestos/" style="color: #365899; cursor: pointer; text-decoration: none;">Global Ban Asbestos Network (GBAN)</a> Australian Director in her new BLOG: I’m back on Keytruda after break of 6 months! She has over 10,000 signatures on her petition - but needs more. Please sign and share. Also featured in her blog are comments from <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=743001583" href="https://www.facebook.com/shaneyfelt1" style="color: #365899; cursor: pointer; text-decoration: none;">Rachel Shaneyfelt</a> <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=718835876" href="https://www.facebook.com/john.steele.39948" style="color: #365899; cursor: pointer; text-decoration: none;">John Steele</a> <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=100010188524500" href="https://www.facebook.com/profile.php?id=100010188524500" style="color: #365899; cursor: pointer; text-decoration: none;">Geraldine Howard</a> and others. Lou, I love you. <a class="profileLink" data-hovercard="/ajax/hovercard/group.php?id=185217304896341" href="https://www.facebook.com/groups/185217304896341/" style="color: #365899; cursor: pointer; text-decoration: none;">*** BELIEVE *** Lou and Keith's special support page.</a> <a class="profileLink" data-hovercard="/ajax/hovercard/group.php?id=1422706457988554" href="https://www.facebook.com/groups/1422706457988554/" style="color: #365899; cursor: pointer; text-decoration: none;">Asbestos News Worldwide</a> <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=162654027093114" href="https://www.facebook.com/ADAOAsbestos/" style="color: #365899; cursor: pointer; text-decoration: none;">Asbestos Disease Awareness Organization (ADAO)</a> <a class="profileLink" data-hovercard="/ajax/hovercard/group.php?id=151619624891787" href="https://www.facebook.com/groups/151619624891787/" style="color: #365899; cursor: pointer; text-decoration: none;">"Turning Anger Into Action"</a> Asbestos Victims Unite on “Voices on the Wall”</div>
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<span style="color: #1d2129; font-family: helvetica, arial, sans-serif;">http://www.gban.net/2016/09/11/lou-williams-gban-australian-director-im-back-on-keytruda-after-break-of-6-months/</span></div>
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Lou Williams, GBAN Australian Director: I’m back on Keytruda after break of 6 months!</h1>
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<span class="meta-prep meta-prep-author" style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">Posted on</span> <a href="http://www.gban.net/2016/09/11/lou-williams-gban-australian-director-im-back-on-keytruda-after-break-of-6-months/" rel="bookmark" style="background: transparent; border: 0px; color: #777777; margin: 0px; padding: 0px; vertical-align: baseline;" title="12:19 am"><span class="entry-date" style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">September 11, 2016</span></a> <span class="meta-sep" style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">by</span> <span class="author vcard" style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><a class="url fn n" href="http://www.gban.net/author/admin/" style="background: transparent; border: 0px; color: #777777; margin: 0px; padding: 0px; vertical-align: baseline;" title="View all posts by admin">admin</a></span></div>
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<em style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">Posted on September 10, 2016</em></div>
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Please read and share this update on my journey with Keytruda and my efforts to have it made available to mesothelioma patients through Australia’s Pharmacetical Benefits Scheme (PBS). Currently Keytruda is on PBS for Melanoma cancer only (as of Sept 2015). Melanoma patients now pay $6 for infusions of Keytruda while patients who are having Keytruda as a life saving drug pay $5,000 to $10,000 per infusion! I know firsthand the benefits of this drug: I have been battling mesothelioma for 13 years, but thanks to Keytruda I am able to continue doing asbestos advocacy work daily, in particular serving as a resource for newly diagnosed patients.</div>
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Please join thousands of others and <a href="https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug" style="background: transparent; border: 0px; color: #743399; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank">sign my petition</a> to help make this life-saving drug available to Australia’s Mesothelioma Warriors!</div>
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<a href="https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug/u/17816861?tk=3UDks7ezUzUYTRkGepEA2lMflBH97_sKFZtc_qWxvXs&utm_source=petition_update&utm_medium=email" style="background: transparent; border: 0px; color: #743399; margin: 0px; padding: 0px; vertical-align: baseline;" target="_blank"><strong style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><em style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">PETITION UPDATE: Lou Williams back on Keytruda after break of 6 months!</em></strong></a></div>
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<img alt="Lou Williams, GBAN Australian National Director " class="wp-image-2694 size-medium" height="300" sizes="(max-width: 218px) 100vw, 218px" src="http://www.gban.net/wp-content/uploads/2015/03/Screenshot-2015-03-14-07.06.03-218x300.png" srcset="http://www.gban.net/wp-content/uploads/2015/03/Screenshot-2015-03-14-07.06.03-218x300.png 218w, http://www.gban.net/wp-content/uploads/2015/03/Screenshot-2015-03-14-07.06.03.png 374w" style="background: transparent; border: 0px; height: auto; margin: 5px 5px 0px; max-width: 622px; padding: 0px; vertical-align: baseline;" width="218" /><div class="wp-caption-text" style="background: transparent; border: 0px; color: #777777; font-family: "Helvetica Neue", Arial, Helvetica, "Nimbus Sans L", sans-serif; font-size: 12px; margin: 5px 5px 24px; padding: 0px; vertical-align: baseline;">
Lou Williams, GBAN Australian National Director</div>
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In March 2015, I was on death’s door: A couple of weeks of living on oxygen 24/7, morphine, 42 kilos, red blood cells stopped producing, needing blood transfusions, appetite non-existent, body shutting down fast, and bed ridden.</div>
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At a cost to us, I was given a lifeline to Keytruda. It brought me back to good health within 3 months; my weight improved, appetite returned, no need for oxygen or high morphine—meds giving me excellent quality of life and my life back! Tumours shrunk significantly and fluid decreased in peritoneal and pleural mesothelioma. I continued on Keytruda infusions every 3 weeks for 1 year.</div>
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I had a scan in February of 2016 showing 2 nodules growing inside chest wall. As my immune system was high thanks to Keytruda, my oncologist Dr. Allan Zimet took me off Keytruda to hit these nodules with new chemo Vinoralbine combined with carboplatin. Unfortunately, I had a severe reaction to the chemo steroid drug dexamethasone on this new chemo regime and the build up of it in my body over 13 years of treatment. Basically I went into a coma at home and was rushed to hospital where it was a life and death situation. I pulled through (again) learning to eat, walk, and get back to quality of life. This caused my pancreas to shut down and me becoming a diabetic type 1, injecting daily.</div>
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I had 3 months of the chemo minus steroid dexamethasone and had scan at end of July showing this chemo did zilch–tumours now on the rise inside my chest wall and a tumour on my liver growing.</div>
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After 6 months break since finishing Keytruda I am now back on 3 weekly infusions to shrink these little buggars! <strong style="background: transparent; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">I will never never never give up!</strong></div>
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Huge, huge thank you to my friends and fellow Mesothelioma Warriors for all the support, love, and strength you send my way:</div>
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Now my current update 18 September 2016.</div>
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I went in to hospital last Thursday 15 September and had Keytruda no. 19, Keith had to use a wheelchair to wheel me into the hospital as I was extremely weak. After blood tests it turned out that I was very very anaemic and haemoglobin 79 - so very low</div>
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After a stay overnight, Keytruda infusion and 6 hours of new blood - I was able to walk out of the hospital on Friday.</div>
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Resting at home and regaining my warrior strength.</div>
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Plus helping others with mesothelioma, their families and assisting support groups etc daily.</div>
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I need to be well to attend in Brisbane on 19 October 2016 the Asbestos Symposium where I will be speaking about myself and keytruda.</div>
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Mid Nov we will be attending ASEA's (Asbestos Safety Eradication Agency) annual international asbestos management Conference in Adelaide, South Australia and hopefully speaking there.</div>
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End of October ADFA (Asbestos Diseases Foundation Australia) hold their annual Race Day fundraiser and plans for Keith and myself to attend are in the pipeline.</div>
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<span style="color: #333333; font-family: Georgia, Bitstream Charter, serif;">http://www.adfa.org.au/</span></div>
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Toula and Mark Mavrick are hosting a very special gala Greek themed evening in Sydney, on behalf of Mark's mum Voula who sadly lost her life to Mesothelioma Please join them in their celebrations and to raise much needed funds for ADRI (Asbestos Diseases Research Institute).</div>
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I will be in attendance and speaking on Keytruda and my journey living with Mesothelioma.</div>
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com3tag:blogger.com,1999:blog-5133511194592631204.post-54596367011093358382016-07-19T05:39:00.000-07:002016-07-19T05:39:07.000-07:00Remembering David who passed away today from Mesothelioma aged 37<div class="separator" style="clear: both; text-align: center;">
Today we say farewell to David from Brisbane, Queensland who passed away this morning from pleural mesothelioma aged just 37 years. He along with his soulmate and 2 children fought this as a brave warrior never giving up until his last breath. My heart is with his soulmate and family. </div>
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<b>His soulmate shares below a tribute and picture of David.</b></div>
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My beautiful man remains forever young at 37 y</div>
ears, 9 months and 14 days - he passed calmly at three this morning, to join his loved ones on the other side - watching over us forever. <div>
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<br />Please keep our family and our children in your thoughts, as we celebrate what a special person he was - someone who always put others first, who loved me and our children passionately, and who stayed hopeful until <span class="text_exposed_show" style="display: inline;">his last breath.<br /><br />We bickered like crazy, but that man was and will always be, my big love.<br /><br /><a data-hovercard="/ajax/hovercard/user.php?id=705007897&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/david.fry.334" style="color: #365899; cursor: pointer; text-decoration: none;">David Fry</a> 05 October 1978 - 19 July 2016<br /><br /><i class="_3kkw _4-k1" style="background-image: url("https://www.facebook.com/images/emoji.php/v5/ube/1/16/2764_fe0f.png"); background-size: 16px 16px; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"><span class="accessible_elem" style="clip: rect(1px 1px 1px 1px); height: 1px; overflow: hidden; position: absolute; white-space: nowrap; width: 1px;">❤️</span></i>loved for eternity<i class="_3kkw _4-k1" style="background-image: url("https://www.facebook.com/images/emoji.php/v5/ube/1/16/2764_fe0f.png"); background-size: 16px 16px; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"><span class="accessible_elem" style="clip: rect(1px 1px 1px 1px); height: 1px; overflow: hidden; position: absolute; white-space: nowrap; width: 1px;">❤️</span></i></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqNxxLueSkTcemQcZFommOq6VXprSBu1-AenpxArVzz8EtDYprmnd53vlZ47fLWeUwxo3gGz3RzAbGLdguZOnUTuy5w_vOsze0FQc1vnmK9tAT-UFVh8iGbaZ2uOEEbswXNlAl1dLzgdp0/s1600/David+Fry.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqNxxLueSkTcemQcZFommOq6VXprSBu1-AenpxArVzz8EtDYprmnd53vlZ47fLWeUwxo3gGz3RzAbGLdguZOnUTuy5w_vOsze0FQc1vnmK9tAT-UFVh8iGbaZ2uOEEbswXNlAl1dLzgdp0/s320/David+Fry.jpg" width="320" /></a></div>
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We were recently in Queensland on the beautiful and warm Gold Coast catching up with family and friends, in particular grandkids. (Evie turning 6 as Elsa from Frozen)!<br />
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<span style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;">NanNan with little granddaughter Meadow </span><i class="_3kkw _4-k1" style="background-color: white; background-image: url("https://www.facebook.com/images/emoji.php/v5/ube/1/16/2764_fe0f.png"); background-size: 16px 16px; color: #1d2129; display: inline-block; font-family: helvetica, arial, sans-serif; font-size: 14px; height: 16px; line-height: 18px; vertical-align: -3px; width: 16px;"><span class="accessible_elem" style="clip: rect(1px 1px 1px 1px); height: 1px; overflow: hidden; position: absolute; white-space: nowrap; width: 1px;">❤️</span></i><br />
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<span style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">Asbestos Memorial Service, Asbestosis & Mesothelioma Association of Australia (AMAA) 8 July 2016 (Lou - guest speaker) it was very s</span><span style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;">pecial and heartwarming to have been invited to attend and speak.</span><br />
<u style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;"><b>Annual Asbestos Memorial Service</b></u><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><u style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;"><b>Asbestosis & Mesothelioma Association of Australia (AMAA)</b></u><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><u style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;"><b> Friday 8 July 2016 </b></u><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;">AMAA Headquarters at Seagulls Club 80 Gollan Drive Tweed Heads West</span><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;">PO Box 1178, Tweed Heads, NSW 2485</span><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;">Tel: 07 5587 9006 or 1800 017 758 - Mob: 0417 705 534</span><br style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;" /><span style="background-color: #fefdfa; color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; line-height: 18.2px;">Email: info@asbestosassociation.com.au - www. asbestosassociation.com.au</span></div>
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We enjoyed a dinner the night before the Memorial service catching up with various members of AMAA, Barry Robson ADFA (Asbestos Diseases Foundation Australia Org) President and also Peter Tighe, ASEA (Asbestos Safety Eradication Agency) CEO.</div>
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Catching up with 2 brave Meso warriors, both diagnosed Sept 2015 with mesothelioma. Brian is on Keytruda and doing very well.</div>
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<br style="background-color: #fefdfa;" /><span aria-live="polite" class="fbPhotosPhotoCaption" data-ft="{"tn":"K"}" id="fbPhotoSnowliftCaption" style="background-color: white; color: #1d2129; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; outline: none; width: auto;" tabindex="0"><span class="hasCaption"><br /><a aria-describedby="js_yx" aria-haspopup="true" aria-owns="js_yw" data-hovercard="/ajax/hovercard/user.php?id=1367362905&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/peter.tighe.58" id="js_yy" style="color: #365899; cursor: pointer; text-decoration: none;">Peter Tighe</a>, CEO ASEA (Asbestos <a data-hovercard="/ajax/hovercard/page.php?id=590086754372681&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/AsbestosSafetyandEradicationAgency/" style="color: #365899; cursor: pointer; text-decoration: none;">Asbestos Safety and Eradication Agency</a></span></span><span class="fbPhotoTagList" id="fbPhotoSnowliftTagList" style="background-color: white; color: #1d2129; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;"><span class="fcg" style="color: #90949c;"> — at <i class="_agk img sp_dn_m1AauxQx sx_ade8f3" style="background-image: url("/rsrc.php/v2/yl/r/7mCkEjtPNNA.png"); background-position: -50px -50px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; margin-right: 3px; max-height: 16px; max-width: 16px; vertical-align: -2.9px; width: 12px;"></i><span class="fbPhotoTagListTag withTagItem tagItem"><span class="textTagHovercardLink taggee" style="color: #333333;">Annual Asbestos Memorial Service Asbestosis & Mesothelioma Association of Australia (AMAA) Friday 8 July 2016</span></span></span></span></div>
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<span class="fbPhotoTagList" style="background-color: white; color: #1d2129; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;"><span class="fcg" style="color: #90949c;"><span class="fbPhotoTagListTag withTagItem tagItem"><span class="textTagHovercardLink taggee" style="color: #333333;"><span aria-live="polite" class="fbPhotosPhotoCaption" data-ft="{"tn":"K"}" id="fbPhotoSnowliftCaption" style="color: #1d2129; display: inline; outline: none; width: auto;" tabindex="0"><span class="hasCaption">Lou Williams – Social Media Voice ADFA & Australian National Director GBAN<br />(Global Ban Asbestos Network) - Leading the National Campaign to have the Mesothelioma Immunotherapy drug Keytruda listed for PBS.</span></span><span class="fbPhotoTagList" id="fbPhotoSnowliftTagList" style="color: #1d2129; display: inline;"><span class="fcg" style="color: #90949c;"> — at <i class="_agk img sp_dn_m1AauxQx sx_ade8f3" style="background-image: url("/rsrc.php/v2/yl/r/7mCkEjtPNNA.png"); background-position: -50px -50px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; margin-right: 3px; max-height: 16px; max-width: 16px; vertical-align: -2.9px; width: 12px;"></i><span class="fbPhotoTagListTag withTagItem tagItem"><span class="textTagHovercardLink taggee" style="color: #333333;">Annual Asbestos Memorial Service Asbestosis & Mesothelioma Association of Australia (AMAA) Friday 8 July 2016</span></span>.</span></span></span></span></span></span></div>
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<span class="fbPhotoTagList" style="background-color: white; color: #1d2129; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;"><span class="fcg" style="color: #90949c;"><span class="fbPhotoTagListTag withTagItem tagItem"><span class="textTagHovercardLink taggee" style="color: #333333;"><span class="fbPhotoTagList" style="color: #1d2129; display: inline;"><span class="fcg" style="color: #90949c;"><span aria-live="polite" class="fbPhotosPhotoCaption" data-ft="{"tn":"K"}" id="fbPhotoSnowliftCaption" style="color: #1d2129; display: inline; outline: none; width: auto;" tabindex="0"><span class="hasCaption">AMAA (Asbestosis Mesothelioma Asbestos Association Australia) Nick Bos, Lou Williams and Peter Tighe</span></span><span class="fbPhotoTagList" id="fbPhotoSnowliftTagList" style="color: #1d2129; display: inline;"><span class="fcg" style="color: #90949c;"> — at <i class="_agk img sp_dn_m1AauxQx sx_ade8f3" style="background-image: url("/rsrc.php/v2/yl/r/7mCkEjtPNNA.png"); background-position: -50px -50px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; margin-right: 3px; max-height: 16px; max-width: 16px; vertical-align: -2.9px; width: 12px;"></i><span class="fbPhotoTagListTag withTagItem tagItem"><span class="textTagHovercardLink taggee" style="color: #333333;">Annual Asbestos Memorial Service Asbestosis & Mesothelioma Association of Australia (AMAA) Friday 8 July 2016.</span></span></span></span></span></span></span></span></span></span></div>
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<span aria-live="polite" class="fbPhotosPhotoCaption" data-ft="{"tn":"K"}" id="fbPhotoSnowliftCaption" style="background-color: white; color: #1d2129; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; outline: none; width: auto;" tabindex="0"><span class="hasCaption">Enjoyed a wonderful catch up with Gail Cook a beautiful Meso warrior. Gail's darling husband and soulmate Steve lost his life to deadly asbestos cancer <i class="_3kkw _4-k1" style="background-image: url("https://www.facebook.com/images/emoji.php/v5/ube/1/16/2764_fe0f.png"); background-size: 16px 16px; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"><span class="accessible_elem" style="clip: rect(1px 1px 1px 1px); height: 1px; overflow: hidden; position: absolute; white-space: nowrap; width: 1px;">❤️</span></i></span></span><span class="fbPhotoTagList" id="fbPhotoSnowliftTagList" style="background-color: white; color: #1d2129; display: inline; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;"><span class="fcg" style="color: #90949c;"> </span></span></div>
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com1tag:blogger.com,1999:blog-5133511194592631204.post-57323747084145260752016-07-02T05:28:00.000-07:002016-07-02T05:30:10.795-07:00Asbestos Memorial Service, Asbestosis & Mesothelioma Association of Australia (AMAA) 8 July 2016 (Lou - guest speaker)I have been invited by AMAA (Asbestosis & Mesothelioma Association of Australia) to speak at their Annual Asbestos Memorial Service.<br />
<br />
It is very special and heartwarming to have been invited to attend and speak. I am looking forward to meeting many members of AMAA.<br />
<br />
<u><b>Annual Asbestos Memorial Service</b></u><br />
<u><b>Asbestosis & Mesothelioma Association of Australia (AMAA)</b></u><br />
<u><b> Friday 8 July 2016 </b></u><br />
<br />
<br />
AMAA Headquarters at Seagulls Club 80 Gollan Drive Tweed Heads West<br />
PO Box 1178, Tweed Heads, NSW 2485<br />
Tel: 07 5587 9006 or 1800 017 758 - Mob: 0417 705 534<br />
Email: info@asbestosassociation.com.au - www. asbestosassociation.com.au<br />
ACN: 602 979 000<br />
<br />
<u><b>ASBESTOS MEMORIAL SERVICE</b></u><br />
<br />
The members and friends of the Asbestosis and Mesothelioma Association of Australia welcomes you to our annual asbestos memorial service. Your presence here today is heart warming and we hope you draw comfort from the friendship and support AMAA offers you.<br />
<br />
MC Professor Mike Capra (AMAA Patron)<br />
<br />
9.50 Bagpipes – Sandra Capra (AMAA Patron)<br />
<br />
10.00 Mike Capra introduces Seagulls Club CEO Stuart Burrows<br />
<br />
Stuart Burrows introduces Geoff Provest MP for Tweed <br />
<br />
OFFICIAL WELCOME – Geoff Provest<br />
<br />
Brisbane Combined Unions Choir<br />
<br />
10.10 Barry Robson – President ADFA introduces Lou Williams<br />
<br />
10.15 Lou Williams – Social Media Voice ADFA & Australian National Director GBAN<br />
(Global Ban Asbestos Network) - Leading the National Campaign to have the Mesothelioma Immunotherapy drug Keytruda listed for PBS.<br />
<br />
Brisbane Combined Unions Choir - Asbestos Song<br />
<br />
10.25 <br />
Prayers of Remembrance<br />
<br />
“We come together as a community today in prayer to express our gratitude to the volunteers and community representatives who work to give greater respect, dignity and care to individuals affected by asbestos. May these organisations, including the Asbestosis and Mesothelioma Association of Australia, continue to grow in strength as they give a voice to the most needy in our community”. Amen<br />
“We recognise the dedication and commitment of the tireless medical staff, allied health professionals and clinicians who seek to give sufferers of asbestos related diseases dignity and respect.” Amen<br />
<br />
“We commemorate the sacrifice and service of members of the defence forces who have given tirelessly to protect our people and in doing so may have been exposed to asbestos. May we acknowledge their bravery and offer them our unfailing support and gratitude both now and in the future.” Amen<br />
<br />
“We pray for the many carers, friends and family members who have stood by their loved ones as they undergo treatment for asbestos related conditions. May they find strength to continue with their selfless and unfaltering efforts.” Amen<br />
<br />
“We offer encouragement to representatives of industry, government and the trade union movements to continue their efforts to protect the community from asbestos exposure. May you work cooperatively and proactively to minimise the impact of asbestos both in Australia and internationally.” Amen<br />
<br />
10.45 Bagpipes (played by Sandra Capra) as flag lowered to half mast by AMAA Member and high school student Ethan Carr.<br />
<br />
Minute Silence<br />
<br />
Brisbane Combined Unions Choir - Waltzing Matilda<br />
<br />
11.55 Peter Tight CEO ASEA – Thanks and CloseAnonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com1tag:blogger.com,1999:blog-5133511194592631204.post-71711880702273942016-06-20T06:16:00.000-07:002016-06-20T06:16:07.711-07:00Keytruda and other similar immunotherapy drugs/treatments stimulate the immune system to fight the tumours! People with a life threatening illness such as cancer simply do not have time to waste!Hi<br />
Winter and our shortest day of the year tomorrow here in Australia (21 June). Misty, foggy and light falling rain seems to be our normal weather daily pattern with top temperatures reaching 12 to 16 degrees celcius.<br />
<br />
Merck (USA) posted this article in the press last Thursday. It explains a breakthrough/good response with non-small cell lung cancer treating it with Keytruda/Immunotherapy compared to chemotherapy. <br />
<br />
<br />
https://www.thestreet.com/story/13609867/1/merck-extends-cancer-immunotherapy-reach-to-first-line-lung-cancer.html<br />
<h2 class="article__callout" itemprop="description">
Merck's flagship
cancer immunotherapy Keytruda delayed the re-growth of tumors and
prolonged survival in patients with newly diagnosed non-small cell lung
cancer compared to chemotherapy, the company said Thursday 16 June 2016!</h2>
<h2 class="article__callout" itemprop="description">
16 June 2016 - USA/Merck<br /> The new phase III study results from Merck
are significant because they represent the first time that a drug
belonging to the so-called checkpoint inhibitor class of cancer
immunotherapies has demonstrated superiority over standard of care in
the treatment of first-line lung cancer patients.<br /> Merck is the first
of the Big Pharma companies to demonstrate the efficacy of a checkpoint
inhibitor in newly diagnosed lung cancer, but it will likely have
company soon.<br /> Bristol-Myers Squibb (BMY) is expected to announce
results from a phase III study of Opdivo in first-line lung cancer in
the third quarter. Roche (RHHBY) is also making an aggressive push with
its own checkpoint inhibitor into lung cancer.</h2>
<div class="article__callout" itemprop="description">
Lou's comment:</div>
<div class="article__callout" itemprop="description">
To me this is a huge breakthrough for Keytruda and getting it along with other immunotherapy drugs on to our Australian PBS fast tracked for Mesothelioma and other rarer less known cancers that it is also showing promise with.</div>
<div class="article__callout" itemprop="description">
It needs to be on the PBS as first line and second line treatments, and should be available on the PBS free for everyone who will benefit from this immunotherapy treatment. It is used after all other protocol treatments have 'failed' in particular for Mesothelioma. This is so wrong! Keytruda and other similar immunotherapy drugs/treatments stimulate the immune system to fight the tumours! People with a life threatening illness such as cancer simply do not have time to waste!</div>
<div class="article__callout" itemprop="description">
<br /></div>
<div class="article__callout" itemprop="description">
At the moment, Keytruda and some other immunotherapy drugs that are not on our PBS are costing patients at least $5,000 to $9,000 out of pocket for each infusion! So so wrong! How on earth are we supposed to afford this life saving treatment? Families do not need this added stress when faced with a life threatening illness. It is bad enough coping with the routine of surviving the never ending rounds of medical specialists/hospitals/bathroom and bed (never ending nausea/pain/fatigue)!!</div>
<div class="article__callout" itemprop="description">
<br /></div>
<div class="article__callout" itemprop="description">
2 examples of patients with Mesothelioma and who are currently having life saving Keytruda immunotherapy treatments. Please take a moment to read their stories of survival, strength and hope.</div>
<div class="article__callout" itemprop="description">
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<div class="article__callout" itemprop="description">
Help fight asbestos lung cancer</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUQzNS5uZ64Enck83ZXUuxPzFClz-kVMqW9Is-mzivU9B4xiMB0P7cVOvHSt3ZoC6il4hYQ6Rcxo7xy0Eyp3nOdt4kCPDLGzfr_bzRCJtQJR7tg3FOrd99AqU_6Hrah32aWx07IWSPJrX2/s1600/1866568_1464935960.3713.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUQzNS5uZ64Enck83ZXUuxPzFClz-kVMqW9Is-mzivU9B4xiMB0P7cVOvHSt3ZoC6il4hYQ6Rcxo7xy0Eyp3nOdt4kCPDLGzfr_bzRCJtQJR7tg3FOrd99AqU_6Hrah32aWx07IWSPJrX2/s320/1866568_1464935960.3713.jpg" width="320" /></a></div>
<div class="article__callout" itemprop="description">
8 months ago, David was diagnosed with Malignant Pleural Mesothelioma
(lung cancer caused by asbestos exposure); a terminal cancer that
usually affects people in their 70s, has hit my lovely man at 37 - 2
weeks after his 37th birthday, he was given 12 months to live.<br /><br />MPM
is a rare and aggressive cancer, and David's is growing fast - we need
to access immunotherapy drugs, called keytruda, that have displayed
amazing results for tumour reduction and quality of life. It comes at an
enormous cost though - with a young family and currently zero income,
we are facing up to $13000 every 3 weeks; which is simply unobtainable
without becoming homeless.<br /><br />If anyone is in a position to help, it
would be more appreciated than you could possibly imagine; as much as I
detest asking for handouts, my kids need their daddy, I need my
husband, and he needs these drugs.<br /><br />Thank you in advance #cancersucks<br /><br />Below is the petition link, fast tracking keytruda onto the pbs, making it accessible for only $6! Please sign xo<br /><br /> <a href="https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=124933620&utm_source=petitions_show_components_action_panel_wrapper&utm_medium=copylink" target="_blank"> </a><a class="txt1" href="https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=124933620&utm_source=petitions_show_components_action_panel_wrapper&utm_medium=copylink" rel="nofollow noopener noreferrer" target="_blank">https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=124933620&utm_source=petitions_show_components_action_panel_wrapper&utm_medium=copylink</a> </div>
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<div class="article__callout" itemprop="description">
Paul Bosworth Fights Mesothelioma </div>
<div class="article__callout" itemprop="description">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ6MER7a6Ei3GKQ8bTdr4P5sXPWlWJmSeYUlP6yBGwZRxA7QdalTGbTFo-7Gc0lSayjjZeJFg2cuo7G7nAYRCbYHHs-ZWqgxEiWAD_i7qIUVoKUnZcs5g3kdr08kH5Rv_49B3bvOIKFLn7/s1600/11175389_1462417724.3519.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ6MER7a6Ei3GKQ8bTdr4P5sXPWlWJmSeYUlP6yBGwZRxA7QdalTGbTFo-7Gc0lSayjjZeJFg2cuo7G7nAYRCbYHHs-ZWqgxEiWAD_i7qIUVoKUnZcs5g3kdr08kH5Rv_49B3bvOIKFLn7/s320/11175389_1462417724.3519.jpg" width="320" /></a></div>
<div class="article__callout" itemprop="description">
</div>
<div class="article__callout" itemprop="description">
Hi Everyone,<br /><br /><strong>As many of you are already aware, our dad,
Paul Bosworth, was diagnosed with mesothelioma, the asbestos lung
cancer, in August 2014. Dad is only 66 years young. </strong> <br /><br />Dad
retired after 46 years of working - 36 of those years spent at Griffith
University - and was ready to start his retired life with our step-mum
Stana, when he was diagnosed with mesothelioma. This was a huge shock
to us all as Dad has always been so healthy! Dad never worked with
asbestos, but somehow came into contact with it in the worst way
possible. But, as we know, cancer doesn’t discriminate and it only
takes 1 fibre of asbestos inhaled 30-something years prior to cause this
type of cancer. <br /><br />Dad has completed two gruelling chemo
treatments over 10 months, radiation and an immunology vaccine trial and
his tumour has stayed almost the same size however, over the past
several months dad has had to endure very strong pain medication to
manage the excruciating pain caused by his cancer. The pain dad
suffered pretty much halted his life: he lost a lot of weight and lost
his energy, wasn’t sleeping or eating and wasn’t enjoying life anymore.
So now that Dad has gone through chemo, radiation and the immunology
vaccine trial; and exhausting all these options, we are now looking at
“what next?”. <br /><br />On Friday 22nd April, Dad started on a drug called <strong>Keytruda</strong>.
This immunotherapy drug may be the lifeline patients around the world
have been seeking. In a clinical trial, Keytruda was found to be
effective in controlling mesothelioma tumours in three-quarters
of patients. The 25 patients enrolled in the trial, all who had
previously received standard chemotherapy treatment but still had tumour
growth, received the drug every two weeks. Seven patients had partial
response (a decrease in tumours size) and 12 patients had stable disease
(no tumour growth or shrinkage). <strong>The final results showed an overall disease control rate of 76%!</strong><br /><br />As Keytruda is
not on the Pharmaceutical Benefit Scheme (PBS) for mesothelioma, and in
order for Dad to start this treatment, he has to come up with almost
$5000 every 3 weeks (approx. $86,000 a year!). These are the out of
pocket expenses and this is not financially sustainable for a retiree.<br /><br /><strong>In
the short time that Dad has been on this drug, he has noticed a
remarkable improvement in his quality of life. The pain that he has
suffered has almost gone, he’s reduced his pain medication and his
fighting spirit is back! </strong> <br /><br />Please help us fund Dad’s
treatment so we can keep our old man off the streets – we love him and
we want him around to be a part of all the little joys that life brings
as we get older (ie. weddings, grand-kids, fur-grand-kids, retirement
etc). Keytruda can and will help keep Dad around!<br /><br />We love you and we thank you for any donation that you can provide to help save our dad - we are eternally grateful.<br /><br />Love, <br />Tania & Karl <br />xo<br /><br /><em>Other Information:</em><br /><em>Keytruda is
on the PBS for melanoma patients and we are hoping (with the hard work
of advocates like Lou Williams) that it will be successful in being put
on the PBS for mesothelioma! When it’s on the PBS, it costs patients
$37/dose. A far cry from the $4700/dose dad, and other
Mesothelioma Warriors have to cough up!</em><br /><br /><em>For more
information on living with mesothelioma, check out Lou’s blog – this
gives you a great insight into what it’s like having meso and the
constant fight to stay alive. Lou is an amazing inspiration! <a href="http://asbestosaustralia.blogspot.com.au/" target="_blank">Lou William's Fight Against Mesothelioma</a> </em><br /><br /><em>To sign the petition to help us get Keytruda on the PBS for Meso patients, please visit <a href="https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug" target="_blank">Change.org : Petition to have Keytruda on the PBS</a> </em></div>
Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com1tag:blogger.com,1999:blog-5133511194592631204.post-74717190978514091012016-06-16T00:20:00.001-07:002016-06-16T00:20:14.615-07:00Winter has set in and be mindful of colds leading to infections/pneumonia & ASEA 2016 Asbestos Awareness & Management Conference 13-15 Nov 2016Hi<br />
<br />
It has been a few weeks since my last blog. Our winter weather (Australia) has well and truly set in. Heater on during the day and open fire at night to warm the lounge room and our bones plus of course Charlie (our Siamese elderly cat) who loves nothing better than curling up on our laps or the chair closest to the Coonara heater.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfNUEiD6i8VTbvxJvs85yVlIn59VQUCYeN2pqSNbaR7SGoSl1rHjFAq5hqKIkQxfFjnaIZwHw2vDMqGzpBQszjpzjq4_w5u-6QsOGymFupR7maTamPyIYuFw5AgMYaPR_UoKL1JFAfQU2j/s1600/13346697_10153683416522896_3014635357224542874_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfNUEiD6i8VTbvxJvs85yVlIn59VQUCYeN2pqSNbaR7SGoSl1rHjFAq5hqKIkQxfFjnaIZwHw2vDMqGzpBQszjpzjq4_w5u-6QsOGymFupR7maTamPyIYuFw5AgMYaPR_UoKL1JFAfQU2j/s320/13346697_10153683416522896_3014635357224542874_n.jpg" width="238" /></a></div>
<br />
<br />
In particular anyone with mesothelioma/asbestosis needs to be mindful of colds that could lead to infection/pneumonia. This time of the year especially during chemotherapy treatment I avoid shopping malls where it would be easy to be coughed upon by someone who has the dreaded lurgy/flu and should be home in bed resting.<br />
<br />
<h2 class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38">Pneumonia
is an inflammatory condition of the lung affecting primarily the
microscopic air sacs known as alveoli. Typical signs and symptoms
include a cough with phlegm, chest pain, fever, and trouble breathing.
Symptoms can vary from mild to severe. People who are old or very young
may not have typical symptoms. Usually people begin improving within
three days of starting treatment; however, they may feel tired for more
than a month afterwards.</span></span></h2>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38"> Thanks to Keytruda having infusions every 3 weeks overnight in hospital for 12 months (April 2015 to March 2016) my immune system is still very much in excellent condition and my bloods very good, so the latest chemotherapy Vinoralbine/Carboplatin minus steroids is a breeze re side effects apart from fatigue that just strikes when it wants to, however in the scheme of things - it is a minor problem! My last chemotherapy will be next Tuesday followed by CT scans a couple of weeks after that to see further stability/shrinkage of the tumours inside the lungs. I have returned to excellent health, good appetite and doing 'normal' duties around the house/garden and of course daily outings exploring our beautiful countryside.</span></span></div>
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<span id="dscexpitem_-1243278969_2"><span data-bm="38"></span></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdto30uiTC-TDhBlcLIifxiLPk1_IzeeuP-MvbV6QpFi13Rl2LHhfTd8ChI6h48pyEM8OkibwNWMBgTAtxBEZFf5cUE0U4-SwqlELG11JbE26bzqgTCttsvNwqYSFOyLZ1xuiYanx7DfLw/s1600/13413082_1039484542766231_6187208917291515465_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdto30uiTC-TDhBlcLIifxiLPk1_IzeeuP-MvbV6QpFi13Rl2LHhfTd8ChI6h48pyEM8OkibwNWMBgTAtxBEZFf5cUE0U4-SwqlELG11JbE26bzqgTCttsvNwqYSFOyLZ1xuiYanx7DfLw/s320/13413082_1039484542766231_6187208917291515465_n.jpg" width="320" /></a></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38">I am very excited to post the above logo for the annual Asbestos Safety & Eradication Agency (ASEA) annual Asbestos Awareness & Management International Conference will be held in Adelaide, South Australia 13 - 15 November 2016.</span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38"><br /></span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38">I have been involved and attended both previous conferences held in Melbourne (2014) and Brisbane (2015). It is an absolute pleasure to be part of these conferences and I look forward to being involved and attending this one in November!</span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38">----------------------------------------------------------------------------------------------------------------------</span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38">To all warriors around the world I send my love, warrior strength and cocooned hugs to you.</span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38">My email is eradicateasbestos@gmail.com</span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38"><br /></span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38">Lou xx</span></span></div>
<div class=" b_entityTitle">
<span id="dscexpitem_-1243278969_2"><span data-bm="38"><br /></span></span></div>
Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-76088923665086444662016-05-25T05:51:00.000-07:002016-05-25T05:51:00.430-07:00Keytruda continuing to kick goals with Lou's Mesothelioma!Hi all<br />
<br />
Well our weather has turned very cold, windy and tempting rain drops! I guess winter is here!! Next Wednesday 1 June 2016 our winter season officially commences for 3 months, then we can look forward to beautiful Spring weather from 1 September!<br />
<br />
Last Friday was a marathon day at Epworth hospital, Richmond, Melbourne for CT scans on neck, chest, pelvis and abdomen. A cannula was inserted into the arm and contrasting dye injected during the scans.<br />
<span style="background-color: white; color: #444444; font-family: 'Lucida Grande', Geneva, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 21px;">A computed tomography (CT) scan is an imaging method that uses x-rays to create pictures of cross-sections of the body.</span><br />
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Yesterday a visit to John Fawkner Hospital, Melbourne for bloods to be taken at pathology, consultation with my oncologist Allan Zimet then chemo with Day Chemo if bloods were okay.<br />
Bloods were fine, so chemo was given the go ahead! <br />
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Results of scans showed <b>STABLE, no change really since my last scans in March 2016.</b> <b>Keytruda is still in my system and working</b> to keep tumours stable along with the 4 chemotherapy infusions of Vinorelbine/Carboplatin minus steroid Dexamethasone and the drug Maxolon! <br />
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<b>My health has returned to excellent quality of life, and still NO PAIN since commencing Keytruda in April 2015! </b> So I am on maintenance chemotherapy of Vinorelbine/Carboplatin with the hope of shrinkage rather than stable of tumours. There is the mention of Keytruda to have further top up infusions however due to us having to pay $5,000 per treatment it would mean stretching our credit card once more to cover this cost. However as it is life saving treatment then we would not hesitate to have further Keytruda treatments when the time comes.<br />
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Travelling on the Calder Freeway to Melbourne just after 8am this accident had just happened on the other side of road and all traffic was at a standstill. The road remained closed until 5am this morning, so nearly 24 hours of alternative roads.<br />
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PETROL TANKER CAUSES DEADLY MAYHEM ON CALDER FWY</h4>
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One person is killed and five others are injured after an out-of-control petrol tanker rolls over on the Calder Freeway leaving a trail of crushed and damaged cars.</div>
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-63394569293921646622016-05-17T06:45:00.000-07:002016-05-18T22:02:11.416-07:00Keytruda fast track Mesothelioma PBS response from Health Minister Hon Sussan Ley!<div class="body undoreset" id="yui_3_16_0_ym19_1_1463488985223_2811" tabindex="0">
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The above letter is a response that I received in a signed letter from Health Minister Hon Sussan Ley. I think a very good letter for starters and an indication as to the work we still need to do to get Keytruda and other immunotherapy drugs fast tracked on to the PBS for everyone to have access to for $6 rather than $5,000 to $10,000 per infusion because Keytruda and other immunotherapy drugs in Australia are not on our free list, nor are they registered for Mesothelioma use.</div>
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Trevor Grant and myself have on behalf of mesothelioma warriors in Australia sent a letter to the CEO of MSD/Merck who manufacture Keytruda in response to the letter that I received above from Hon Sussan Ley.</div>
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Please continue to sign my petition to get Keytruda (and other immunotherapy drugs) fast tracked on to the PBS for Mesothelioma and 30 other rare cancers. I believe that once are successful in getting Keytruda on to the PBS for all to access as another treatment in Mesothelioma then it will follow for other cancers. It is getting closer and with a bit more pushing we will succeed. This cancer is deadly, lethal, aggressive and we simply do not have time to waste! In unity we can do this!</div>
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https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug</div>
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Email: eradicateasbestos@gmail.com</div>
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com3tag:blogger.com,1999:blog-5133511194592631204.post-56354811943414141542016-05-14T05:31:00.001-07:002016-05-14T05:31:13.830-07:00Keytruda for Mesothelioma gave me back my life! Please continue to sign my petition for fast tracking Keytruda on to PBS.<div class="separator" style="clear: both; text-align: center;">
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<b>Announcement!</b> I just want to shout out that I am feeling almost 100% back to good health! </div>
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Keytruda brought me back to life in April 2015 for 12 months giving excellent quality of life. At the end of March 2016 my scans showed fluid shrinkage, however new tumour growth inside the lungs.</div>
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Thanks to Keytruda stimulating my immune system I was able to commence a chemotherapy regime of vinorelbine/carboplatin to shrink these new tumours. After the first infusion of this combination chemotherapy I went into a coma and was rushed to hospital where it was a miracle that I pulled through! The steroid dexamethasone infused in this chemotherapy created an allergic reaction causing the coma and as a result of this, I now have diabetes type 1 requiring insulin to be injected daily into my stomach as the pancreas has stopped producing insulin.</div>
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Keytruda has not failed me - it has strengthened my immune system giving quality of life and NO PAIN and has enabled me to have this chemotherapy regime as the immune system is excellent!</div>
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20 April 2016 the above picture at my birthday party with 35 family attending. This picture is on my way to recovery after my coma episode in hospital 3 week's prior when it was touch and go if I would pull through! I did and now am on my way well and truly to recovery. I must mention that my hair just went grey overnight upon admittance to the hospital! I have kinda grown used to it!<br />
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The article below is in today's national newspapers around Australia and in particular highlighting Keytruda (immunotherapy drug) as showing promise with 30+ rare cancers. Please continue to sign my petition to get Keytruda and other immunotherapy drugs fast tracked on to our PBS (Pharmaceutical Benefits Scheme) so it will be free for all patients who need these life saving drugs! At the moment costs to patients vary between $5,000 and $9,000 per infusion. We simply do not have time to waste! <br />
Petition link: (Please copy and paste link).<br />
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug<br />
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Drug that saved Ron Walker could help wide range of cancer patients</h1>
<time class="story-header_timestamp" datetime="2016-05-13T13:31:00.000Z" itemprop="datePublished" time="2016-05-13T13:31:00.000Z"><b><span style="color: #81929a; font-size: x-small;">May 13, 2016 11:31pm</span></b></time><br />
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<span class="story-header_byline">GRANT McARTHUR</span><span class="story-header_byline_title">HEALTH EDITOR</span><span class="story-header_source">Herald Sun</span></div>
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<img alt="Subscriber Exclusive Icon" class="story-header_premium-logo-img" src="http://resources.newscdn.com.au/cs/chronicle/ap/latest/assets/img/news-plus.svg" title="Subscriber Exclusive" /></div>
<article class="w_story-content"><article class="story-content"><figure class="story-asset"><img height="366" src="http://cdn.newsapi.com.au/image/v1/eb271f7c2e618f451ade43d7b83e29ed?width=650" width="650" /><figcaption class="description">Ron Walker has backed a campaign to have Keytruda fast tracked for subsidised use on melanoma.</figcaption></figure><div class="intro">
A DRUG that saved Ron Walker from melanoma may also be able to save patients from 30 other types of cancer.<br />
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Immunotherapy drug Keytruda is now showing promising results in 250 international trials, offering hope of a new treatment to thousands of desperate Australians with cancers ranging from breast, pancreatic and lung tumours, to those with leukaemia, myeloma and lymphomas.<br />
Researchers have discovered that the same biomarker the drug aims for in melanoma cells — known as PD-L1 — is also present in many cases of the 30 other cancers.<br />
<b><a href="http://www.heraldsun.com.au/news/victoria/melbourne-cancer-expert-professor-grant-mcarthur-fights-his-own-cancer-battle/news-story/532e804ed1a8677e3b0c6418ace82ce0" target="_blank"><span style="color: #19acf0;">MORE: Cancer expert in fight of his life</span></a></b><br />
This means a new generation of anti-PD-1 drugs like Keytruda and Opdivo may work on cancers that are genetically similar, regardless of where they are located in a patient’s body.<br />
Biomarker tests developed by Keytruda manufacturer MSD show between 15 and 100 per cent of some cancer types may become targets for the drugs, though Peter MacCallum Cancer Centre oncologist Prof Grant McArthur said trials are now determining how effective the treatment was for each disease.</div>
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“There is accumulating evidence on the trials of significant rates of tumour shrinkage on more than just melanoma, lung cancer, kidney cancer ... there is a growing list of cancers that do show a response to the PD-1 drugs,” Prof McArthur said.<br />
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“These drugs are active in multiple diseases. We are anticipating that these PD-1 drugs like Keytruda, Opdivo and others coming through are going to be used in multiple cancer types.”<br />
Cancers are classified depending on where they occur in a person’s body, with different treatments required for each type.<br />
But, because the new drugs work based on the genetic makeup of the cancer’s cells rather than their placement, they require a new set of processes to determine which patients will benefit.<br />
US-based Dr Ken Emancipator, who developed MSD’s PD-L1 biomarker test, said being able to screen the makeup of a patient’s cancer to determine if it will respond to the medication could be the difference to gaining lie-saving treatment early.<br />
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“When the tumour expresses PD-L1 we have identified a patient that is very likely to benefit from an anti-PD-1 therapy,” Dr Emancipator said.<br />
“We are pursuing the test in lots of other cancers. We are looking at monotherapy in 30 different tumour types.”<br />
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The PD-L1 protein usually works to prevent the body attacking its own cells when inflammation occurs. But, because some inflammation-causing cancers have been found to also express PD-L1, drugs that block the protein can trick the body’s immune system into attacking and killing the cancer.<br />
In a further boost researchers believe they may be able to alter other cancers so that they begin causing inflammation, therefore making themselves vulnerable to the new drugs.<br />
After his life was saved as part of a clinical trial, Ron Walker backed a campaign to have MSD’s Keytruda fast tracked for subsidised use on melanoma last year, and last week the Federal Government also subsidised similar PD-1 drug Opdivo.<br />
Dr Emancipator believes the Therapeutic Goods Administration now needs to examine approving drugs based on their effectiveness in treating cancers with similar genetic make-up, rather than classified on their location, to fast track their use.<br />
But TGA spokeswoman Kay McNiece said the impact and safety may vary.<br />
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Lou's email address: eradicateasbestos@gmail.com<br />
In particular if you are or have had Keytruda please email me your details for my file, especially if in Australia.<br />
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-67993957010260979632016-05-05T16:40:00.001-07:002016-05-05T16:40:59.709-07:00There is no safe asbestos! ALL ASBESTOS KILLS!I am constantly amazed to read/hear various reports around the world that continue to pop up saying that not all forms of asbestos are dangerous/deadly! Some for their own reasons choose to believe that chrysotile (white asbestos) is not harmful to humans! I have peritoneal and pleural mesothelioma (asbestos cancer). It is a deadly aggressive brutal painful cancer. Having seen many many beautiful people die of this awful cancer including my darling dad - all asbestos kills - NO DEBATE - END OF STORY!<br />
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Below are postings that may help to alleviate this debate and give some thought to this absurd questioning as to whether chrysotile is not harmful as a carcogenic causing deadly asbestos cancer (Mesothelioma).<br />
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Linda Reinstein is the <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=250335031707257" href="https://www.facebook.com/pages/Co-Founder/250335031707257">Co-Founder</a> at <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=158371317516896" href="https://www.facebook.com/gbanAsbestos/">Global Ban Asbestos Network (GBAN)</a> and <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=109861219064569" href="https://www.facebook.com/pages/Co-FounderCEO/109861219064569">Co-Founder/CEO</a> at <a aria-describedby="js_38" aria-haspopup="true" aria-owns="js_37" class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=162654027093114" href="https://www.facebook.com/ADAOAsbestos/" id="js_39">Asbestos Disease Awareness Organization (ADAO)</a></div>
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<span class="fwn fcg"><span class="fcg"><span class="fwb"><a aria-describedby="js_1t" aria-haspopup="true" aria-owns="js_1s" class="profileLink" data-ft="{"tn":"l"}" data-hovercard="/ajax/hovercard/user.php?id=1173576756&extragetparams=%7B%22directed_target_id%22%3A1422706457988554%7D" href="https://www.facebook.com/Linda.Reinstein.ADAO" id="js_1u">Linda Reinstein</a></span> shared her <a href="https://www.facebook.com/Linda.Reinstein.ADAO/posts/10207843752029744">post</a>. </span></span><span><span class="fsm fwn fcg"><a class="_5pcq" href="https://www.facebook.com/groups/1422706457988554/permalink/1712689575656906/" target=""><abbr class="_5ptz" data-shorten="1" data-utime="1462259896" title="Tuesday, 3 May 2016 at 17:18"><span class="timestampContent" id="js_e">3 May at 17:18</span></abbr></a></span></span>There is no debate or discussion for ADAO. As the World Health Organization (WHO) states, "exposure to asbestos, including chrysotile, causes cancer of the lung, larynx and ovary, mesothelioma (a cancer of the pleural and peritoneal linings) and asbestosis (fibrosis of the lungs).” I strongly RECOMMEND the WHO "Chrysotile Asbestos Report" <a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fbit.ly%2F1dSZW0i&h=uAQFuulKMAQFhQDMDQmGX4vg_TXocvCEg7Evi6QUTVIHUSA&enc=AZNeVFPOw5CqjA02-V-qMv5-QoqwrtszzOjo8_JZJzuTzLDCSlvrCR1zZVJOfrwPX9gugt0oCVDcCXaclNlNdZwc53Cc-cl2Y6gy6LqGhUlUeoKsZ55s_MCFGfapp1eJjUcSNpBf806jQBtqIVGDdXntOpSbVSy3Js2eLu_vtQKvEBlFvxdjx4vb8E9tI-Y2ZSI&s=1" rel="nofollow" target="_blank">http://bit.ly/1dSZW0i</a></h5>
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<img alt="Linda Reinstein's photo." class="scaledImageFitWidth img" height="364" src="https://scontent-sjc2-1.xx.fbcdn.net/v/l/t1.0-9/13139191_10207843751109721_1589320395420249871_n.jpg?oh=00dbda51c1537582db20c7484c7bf286&oe=579F657C" width="265" /></div>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>http://www.who.int/mediacentre/factsheets/fs343/en/<br />
Asbestos: elimination of asbestos-related diseases<br />
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<!-- Default DIV wrapper for all story meta data --> <span>Fact sheet N°343<br />July 2014</span> </div>
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Key facts</h3>
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<li>About 125 million people in the world are exposed to asbestos at the workplace. </li>
<li>According to WHO estimates, more than 107 000 deaths each year are attributable to occupational exposure to asbestos. </li>
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<h4 class="section_head2">
What is asbestos?</h4>
<span>Asbestos is a group of naturally occurring fibrous minerals with current or historical commercial usefulness due to their extraordinary tensile strength, poor heat conduction, and relative resistance to chemical attack. For these reasons, asbestos is used for insulation in buildings and as an ingredient in a number of products, such as roofing shingles, water supply lines and fire blankets, as well as clutches and brake linings, gaskets and pads for automobiles. </span><br />
<span>The main forms of asbestos are chrysotile (white asbestos) and crocidolite (blue asbestos). Other forms are amosite, anthophylite, tremolite and actinolite.</span><br />
<h4 class="section_head2">
Why is asbestos a problem?</h4>
<span>All forms of asbestos are carcinogenic to humans. Exposure to asbestos, including chrysotile, causes cancer of the lung, larynx and ovaries, and also mesothelioma (a cancer of the pleural and peritoneal linings). Asbestos exposure is also responsible for other diseases such as asbestosis (fibrosis of the lungs), and plaques, thickening and effusion in the pleura.</span><br />
<span>Currently, about 125 million people in the world are exposed to asbestos at the workplace. According to the most recent WHO estimates, more than 107 000 people die each year from asbestos-related lung cancer, mesothelioma and asbestosis resulting from exposure at work. Approximately half of the deaths from occupational cancer are estimated to be caused by asbestos. In addition, it is estimated that several thousand deaths annually can be attributed to exposure to asbestos in the home. </span><br />
<span>It has also been shown that co-exposure to tobacco smoke and asbestos fibres substantially increases the risk for lung cancer – and the heavier the smoking the greater the risk.</span><br />
<h4 class="section_head2">
WHO response</h4>
<span>The World Health Assembly Resolution 58.22 on cancer prevention urges Member States to pay special attention to cancers for which avoidable exposure is a factor, including exposure to chemicals at the workplace and in the environment. </span><br />
<span>With Resolution 60.26, the World Health Assembly requested WHO to carry out a global campaign for the elimination of asbestos-related diseases "…bearing in mind a differentiated approach to regulating its various forms - in line with the relevant international legal instruments and the latest evidence for effective interventions…". …". Cost-effective interventions for prevention of occupational lung diseases from exposure to asbestos are among the policy options for implementing the global action plan for the prevention and control of noncommunicable diseases (2013-2020), as endorsed by the Sixty-sixth World Health Assembly in resolution WHA66.10 in 2013.</span><br />
<span>Eliminating asbestos-related diseases is particularly targeted at countries still using chrysotile asbestos, in addition to assistance in relation to exposures arising from historical use of all forms of asbestos. </span><br />
<span>WHO, in collaboration with the International Labour Organization and other intergovernmental organizations and civil society, works with countries towards elimination of asbestos-related diseases in the following ways:</span><br />
<ul class="disc">
<li>by recognizing that the most efficient way to eliminate asbestos-related diseases is to stop the use of all types of asbestos; </li>
<li>by providing information about solutions for replacing asbestos with safer substitutes and developing economic and technological mechanisms to stimulate its replacement;</li>
<li>by taking measures to prevent exposure to asbestos in place and during asbestos removal (abatement); </li>
<li>by improving early diagnosis, treatment, and rehabilitation services for asbestos-related diseases;</li>
<li>by establishing registries of people with past and/or current exposures to asbestos and organizing medical surveillance of exposed workers;</li>
<li> by providing information on the hazards associated with asbestos-containing materials and products, and by raising awareness that waste containing asbestos should be treated as hazardous waste.</li>
</ul>
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<h2 class="entry-title" data-fontsize="28" data-lineheight="27">
Dr. Richard Lemen: “All Forms of Asbestos Cause Cancer”</h2>
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<a href="http://www.asbestosdiseaseawareness.org/wp-content/uploads/2016/05/Chrysotile-Fact-Sheet-signed-.pdf" target="_blank"><strong><span style="color: #1a80b6;">Chrysotile Fact Sheet</span></strong></a></div>
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<em><span class="s1">Posted on May 3, 2016</span></em></div>
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<span class="s1">Dear Drs. Dean Fennell and David Waller, Co-Chairs of IMig 2016 </span></div>
<div class="wp-caption alignright" id="attachment_14392" style="width: 249px;">
<a class="fusion-no-lightbox" href="http://www.asbestosdiseaseawareness.org/archives/14393/dr-lemen" rel="attachment wp-att-14392"><img alt="Dr. Lemen" class="wp-image-14392 size-medium" height="300" scale="0" src="http://www.asbestosdiseaseawareness.org/wp-content/uploads/Dr.-Lemen-239x300.jpg" width="239" /></a><div class="wp-caption-text">
Dr. Richard Lemen</div>
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<span class="s1">I would like to urge the IMig 2016 Conference, of which you are Co-Chairpersons, to adopt a resolution condemning the continued use of all forms of asbestos, including chrysotile. Yesterday you held a discussion chaired by Dr. Jim teWaterNaude, South Africa and Ms. Laurie Kazan-Allen, United Kingdom, concerning chrysotile asbestos, a substance that has been extensively studied and proven to cause asbestos-induced cancers, including mesothelioma. Now that this discussion is over and both speakers, Dr. David Egilman and Dr. Julian Peto have reiterated that chrysotile asbestos causes asbestos-induced cancers, including mesothelioma, I ask that you and the leadership of IMig 2016 join the World Scientific Community in condemning further use of all forms of asbestos, including chrysotile. </span></div>
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<span class="s1"><br /></span></div>
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<span class="s1">Recently, I and other scientists have put together a </span><strong><a href="http://www.asbestosdiseaseawareness.org/wp-content/uploads/2016/05/Chrysotile-Fact-Sheet-signed-.pdf" target="_blank"><span style="color: #1a80b6;">Chrysotile Fact Sheet</span></a> </strong>summarizing the scientific consensus of its dangers. I am attaching this Fact Sheet and I hope you will make it available to your entire attendance. In it you will see clear consensus that chrysotile asbestos can not be used safely nor is it a safe form of asbestos.</div>
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<span class="s1">I hope that during IMig 2016 your organization will now join the clarion call for a Worldwide ban on the use of all forms of asbestos including chrysotile. As I understand IMig is “an independent international group of scientists and clinicians working to understand, cure and prevent mesothelioma.” Thus, what better time to fulfill this mission and provide leadership through passing a resolution condemning the further use of asbestos worldwide and stopping the mushrooming epidemic of asbestos-related diseases. </span></div>
I wish IMig continued success.<br />
<br />
Sincerely,<br />
Richard A. Lemen, Ph.D., MSPH<br /> Assistant United States Surgeon General,<br /> United States Public Health Service (retired)<br />
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<b><u>CHRYSOTILE ASBESTOS FACTS</u></b> <br />The following facts represent knowledge concerning chrysotile asbestos, the only form of asbestos currently marketed. <br />
<br />Fact 1 For the past two decades, chrysotile has been the only commercially mined form of asbestos being mass marketed. It has constituted over 95% of all asbestos marketed over the past century. The latest data show global use of chrysotile is around 2 million metric tons per year (USGS, 2013). <br />
<br />
Fact 2 Chrysotile is frequently found contaminated with amphibole forms of asbestos, most commonly tremolite (IARC, 2012). However, the UICC Canadian chrysotile, which has been shown capable of causing disease, has not been found to contain tremolite (Frank et al., 1998). <br />
<br />
Fact 3 Chrysotile has been shown to cause asbestosis, lung cancer, mesothelioma and cancers of the larynx and ovary (IPCS, 1998; WTO, 2001; IARC, 2012; WHO, 2014; Collegium Ramazzini, 2015). <br />
<br />
Fact 4 Latest data show the global burden of asbestos-related cancers estimated to be 194,000 deaths per year in 2013, up from 94,000 in 1990 (an increase of over 100%) with a disability-adjusted life-years (DALYs) burden of 3,402,000 – up 94% from 1990 and accounting for nearly two-thirds of the burden from all occupational carcinogens (GBD, 2015). <br />
<br />
Fact 5 Currently, at least 55 countries have banned the use of all forms of asbestos (IBAS, 2015). <br />
<br />
Fact 6 No threshold level of asbestos exposure has been established below which all individuals would be risk free of contracting asbestos-related diseases – <br />2 <br />including those exposed to chrysotile (Royal Commission, 1984; IARC, 1977, 2012; IPCS, 1998; IPCS 2004-2012; Collegium Ramazzini, 2015). <br />
<br />
Fact 7 In 2001 the World Trade Organization reported: “The Panel found too that the efficacy of “controlled use” is particularly doubtful for the building industry and for DIY [do-it-yourself] enthusiasts, which are the most important users of cement-based products containing chrysotile asbestos.” The WTO stated “… we note that the carcinogenicity of chrysotile fibres has been acknowledged for some time by international bodies. This carcinogenicity was confirmed by the experts consulted by the Panel, with respect to both lung cancers and mesotheliomas, even though the experts acknowledged that chrysotile is less likely to cause mesotheliomas than amphiboles. We also note that the experts confirmed that the types of cancer concerned had a mortality rate of close to 100 percent. We therefore consider that we have sufficient evidence that there is in fact a serious carcinogenic risk associated with the inhalation of chrysotile fibres” (WTO, 2001). <br />
<br />
Fact 8 Safer substitutes do exist for replacing chrysotile, thus eliminating the need for use of any type of asbestos in commerce (IPCS, 1998; Harrison et al., 1999; CSTEE, 2002; WBG, 2009; WHO, 2011; Collegium Ramazzini, 2015). <br />
<br />
Fact 9 The International Labor Organization resolved that: “(a) the elimination of the future use of asbestos and the identification and proper management of asbestos currently in place are the most effective means to protect workers from asbestos exposure and to prevent future asbestosrelated diseases and deaths; and (b) the Asbestos Convention, 1986 (No. 162), should not be used to provide a justification for, or endorsement of, the continued use of asbestos” (IL0, 2006). <br />3 <br />
<br />
Fact 10 In October 2013, the International Commission of Occupational Health (ICOH) stated “There is sufficient evidence in humans for the carcinogenicity of all forms of asbestos (chrysotile, crocidolite, amosite, tremolite, actinolite and anthophylite)” (ICOH, 2013). <br />
<br />
Fact 11 On June 4, 2012 the Joint Policy Committee of the Societies of Epidemiology (JPC-SE) after “[A] rigorous review of the epidemiologic evidence confirms that all types of asbestos fibre are causally implicated in the development of various diseases and premature death.” The JPC-SE “Calls for a global ban on the mining, use, and export of all forms of asbestos” and further the JPCSE describes how “Similar to the tobacco industry, the asbestos industry has funded and manipulated research to manufacture findings favourable to its own interests. It has set up front organisations claiming to be expert scientific institutes, such as the Canadian Chrysotile Institute, the Russian Chrysotile Institute, and the Brazilian Chrysotile Institute. But, they are, in reality, lobby groups promoting the continued use of asbestos.” (JPC-SE, 2014) <br />
<br />
Fact 12 In 2014, a multi-disciplinary gathering of scientists meeting in Helsinki, Finland agreed that all types of asbestos cause cancer in man and “In order to prevent the epidemic of asbestos-related diseases from being repeated among workers and communities in the developing world, ceasing the use of new asbestos is essential” (Helsinki Declaration, 2014). <br />
<br />
Fact 13 In 2015, the Collegium Ramazzini (CR) reaffirmed its long-standing position that “well-documented availability of safer, cost-effective alternative materials” exist for asbestos, including chrysotile. The CR supports both the 2006 World Health Organization (WHO) position to cease using all types of asbestos and the 2014 WHO publication Chrysotile Asbestos that “all forms of asbestos, including chrysotile, are causally associated with an increased risk of cancer of the lung, larynx and ovary, mesothelioma and asbestosis” and “are in line with the recent evaluation by the International Agency for <br />4 <br />Research on Cancer (IARC).” (Collegium Ramazzini, 2015; WHO, 2006; WHO, 2014) <br />
<br />
Fact 14 Labor federations including the International Trade Union Confederation (ITUC), the Building and Woodworkers International (BWI), the IndustriAll Global Union (IndustriAll) representing millions of trade union members worldwide have issued calls for asbestos bans, just transition programs for displaced workers and measures to protect affected workers and communities (ITUC, 2006; BWI, 2014; IndustriAll, 2014). <br />(The next facts refer specifically to risks from asbestos-containing roofing products.) <br />
<br />
Fact 15 The recent study by Ferrante et al, 2015 “provides strong evidence of an association between pleural mesothelioma and the use of asbestos-cement roofing (OR=2.5, 95% CI 1.4 to 4.5) and pavement containing asbestos tailings (OR=3.6, 95% CI 1.4 to 9.2) (Ferrante et al., 2015; Stayner, 2015). <br />
<br />
Fact 16 Acknowledging the human health hazard posed by asbestos and the environmental contamination following the destruction of asbestos-containing products after man-made or natural disasters, the World Bank Group, humanitarian organizations and the United Nations High Commissioner for Refugees have recommended that asbestos-containing materials including asbestos-cement building products should not be used in disaster relief (WBG, 2009; GSC, 2010; UNHCR, 2005). <br />
<br />
Fact 17 Strong evidence exists for the occurrence of non-occupational asbestos-related diseases as a result of domestic or environmental exposure to asbestos; in particular, among family members living with asbestos workers (NIOSH, 1995; Ferrante et al., 2015; Stayner, 2015). <br />5 <br />
<br />
Fact 18 “For roofing in remote locations, lightweight concrete tiles can be fabricated using cement, sand and gravel; and optionally, locally available plant fibers such as jute, hemp, sisal, palm nut, coconut coir, kenaf, and wood pulp. Galvanized iron roofing and clay tiles are other alternative materials. Substitutes for asbestos-cement pipe include ductile iron pipe, high-density polyethylene pipe, and metal-wire-reinforced concrete pipes.” (CR, 2015; WBG, 2011; WHO, 2009) <br />
<br />
Fact 19 The World Trade Organization “considers that the evidence before it tends to show that handling chrysotile-cement products constitutes a risk to health rather than the opposite. (emphasis added)” (WTO, 2001). <br />
<br />
Fact 20 The World Health Organizations warns "Continued use of asbestos cement in the construction industry is a particular concern, because the workforce is large, it is difficult to control exposure and in-place materials have the potential to deteriorate and pose a risk to those carrying out alterations, maintenance and demolition. In its various applications, asbestos can be replaced by some fibre materials and other products that pose less or no risk to health” (WHO, 2006). <br />Summary of Facts: Throughout the last thirty years, scientific organizations and governmental agencies have thoroughly and meticulously reviewed extensive published data on asbestos and have concluded that all of its commercially viable fiber types (including amosite, anthophyllite, actinolite, chrysotile, crocidolite, and tremolite) cause disease and death resulting from asbestosis, lung cancer, mesothelioma and cancers of the larynx and ovary. There has not been identified any safe level of exposure to any form of asbestos; i.e. no threshold value below which all individuals would be risk-free of contracting an asbestos-related disease. Therefore, we support the immediate prohibition of the use of any form of asbestos-containing products, including those containing chrysotile, and call for their complete elimination. <br /><br /><b>NOTE: Titles and affiliations are given for identification purposes only.</b> DR. DARIO MIRABELLI, MD. Unit of Cancer Epidemiology, University of Turin (Italy) and CPO Piemonte DR. DOMYUNG PAEK, MD, MSc, ScD, Professor, Former Dean, School of Public Health, Seoul National University, Korea; Former President, Korean Society of Environmental Health DR. COLIN L SOSKOLNE, Professor emeritus, University of Alberta, Edmonton, Canada; Adjunct Professor [July 1, 2013 - June 30, 2016], Faculty of Health, University of Canberra, Australia; Chair, International Joint Policy Committee of the Societies of Epidemiology (IJPCSE) DR. TUSHAR KANT JOSHI, FRCS, FFOM, Director, OEM Programme, Centre for Occupational & Environmental Health, Maulana Azad Medical College, New Delhi, India; Former Occupational Health Consultant, WHO India; Fellow, Collegium Ramazzini; Visiting Professor, Occupational Health, Drexel University, USA PROF. MOHAMED F JEEBHAY, MBChB, MPH, PhD, Occupational Medicine Physician and Director of the School of Public Health and Family Medicine, University of Cape Town, South Africa DR. KEN TAKAHASHI, MD, PhD, MPH, Professor of Environmental Epidemiology, Director of the WHO-CC for Occupational Health, IIES, Director of the International Center, University of Occupational and Environmental Health, Japan WTO, 2001. European Communities-Measures Affecting Asbestos and AsbestosContaining Products. AB-2000-11. World Trade Organization. 12 March. https://www.wto.org/english/tratop_e/dispu_e/135abr_e.pdf SIGNED BY: DR. RICHARD A. LEMEN, PhD, MSPH, Assistant Surgeon General (ret.), Rear Admiral, USPHS (ret.); Adjunct Professor, Rollins School of Public Health, Emory University, Atlanta, GA, USA 9 Royal Commission, 1984. Report of the Royal Commission on Matters of Health and Safety Arising from the Use of Asbestos in Ontario. Authors: Dupre JS, Mustard JF, Uffen RJ. , Ontario Ministry of the Attorney General, Queen's Printer for Ontario , Toronto. Stayner LT, 2015. Para-occupational exposures to asbestos: lessons learned from Casale Monferrato, Italy. Occup Environ Med, Published Online First: doi:10.1136/oemed-2015103233 UNHCR, 2005. Procurement and use of material containing asbestos for UNHCR-funded projects. United Nations High Commissioner for Refugees. Inter-Office Memorandum No. 025/2005. 29 March. USGS. 2013. Minerals Yearbook: Asbestos. United States Geological Survey [Advance Release], U.S. Department of the Interior. http://minerals.usgs.gov/minerals/pubs/commodity/asbestos/myb1-2013-asbes.pdf Van Zandwijk N, 2012. A Third Wave of Asbestos-related Diseases in Australia: Preventive Actions Urgently Needed. 5th Asian Asbestos Initiatives International Seminar, Busan, Republic of Korea. WBG, 2009. Good Practice Note: Asbestos: Occupational and Community Health Issues, May, World Bank Group. http://siteresources.worldbank.org/EXTPOPS/Resources/AsbestosGuidanceNoteFinal.pdf WHO, 2006. Elimination of Asbestos-related Diseases. World Health Organization. http://whqlibdoc.who.int/hq/2006/WHO_SDE_OEH_06.03_eng.pdf?ua=1 WHO, 2011. National Programmes for Elimination of Asbestos-Related Diseases: Review and Assessment 07-08 June 2011, Bonn. Annex 4: Review of substitutes for asbestos construction products by a WHO-temporary advisor, World Health Organization Regional Office for Europe: pp 22-29. http://www.euro.who.int/__data/assets/pdf_file/0005/176261/National-Programmes-ForElimination-Of-Asbestos-related-Diseases-Review-And-Assessment.pdf WHO, 2014. Chrysotile Asbestos. World Health Organization. http://www.who.int/ipcs/assessment/public_health/chrysotile_asbestos_summary.pdf 8 IARC, 1977. IARC Monographs on the Evaluation of Carcinogenic Risk of Chemicals to Man- Asbestos. Vol. 14. International Agency for Research on Cancer, World Health Organization, Lyon, France, pp. 106. IARC, 2012. International Agency for Research on Cancer. IARC Monographs Volume 100C: Arsenic, Metals, Fibres and Dusts; A Review of Human Carcinogens. http://monographs.iarc.fr/ENG/Monographs/vol100C/mono100C.pdf IBAS, 2015. Current Asbestos Bans and Restrictions, Compiled by Laurie Kazan-Allen. International Ban Asbestos Secretariat, 2015. http://www.ibasecretariat.org/alpha_ban_list.php ICOH, 2013. ICOH Statement: Global Asbestos Ban and the Elimination of Asbestos-Related Diseases. International Commission on Occupational Health. http://www.icohweb.org/site_new/multimedia/news/pdf/ICOH%20Statement%20on%20globa l%20asbestos%20ban.pdf IndustriAll, 2014. Asbestos is a Killer. IndustriAll and BWI. 2014. http://www.industriallunion.org/sites/default/files/uploads/documents/Asbestos/a4_asbestos_8pp_en_web.pdf IPCS 2004-2012. Chrysotile. IPCS INCHEM, International Programme on Chemical Safety. Prepared in the context of cooperation between the International Programme on Chemical Safety and the European Commission. IPCS, 1998. Environmental Health Criteria 203 – Chrysotile Asbestos. International Programme on Chemical Safety, United Nations Environment Programme, the International Labour Organisation, and the World Health Organization, Geneva; WHO. http://www.inchem.org/documents/ehc/ehc/ehc203.htm ITUC, 2006. Adopted by the Founding Congress of the ITUC [International Trade Union Confederation] Vienna, November 1–3, 2006). http://www.ituc-csi.org/IMG/pdf/Programme_of_the_ITUC.pdf JPC-SE, 2012. Position Statement on Asbestos from the Joint Policy Committee of the Societies of Epidemiology (JPC-SE), June 4. https://www.ijpc-se.org/documents/03.JPC-SE-Position_Statement_on_AsbestosJune_4_2012-Full_Statement_and_Appendix_A.pdf 7 th Espoo, Finland. http://www.ttl.fi/en/international/conferences/helsinki_asbestos_2014/Documents/20%20Marc h%202014%20Final%20Signed%20Declaration%20for%20website.pdf BWI, 2014. World Board Resolution on Asbestos. Building and Woodworkers International. May 14. http://www.bwint.org/default.asp?index=5538 Collegium Ramazzini, 2015. The Global Health Dimensions of Asbestos and AsbestosRelated Diseases. Castello di Bentivoglio, Via Saliceto, 3, 40010 Bentivoglio , Bologna, Italy. CSTEE, 2002. Risk to human health from chrysotile asbestos and organic substitutes. Scientific Committee on Toxicity, Ecotoxicity and the Environment (CSTEE). The Opinion of EU committee about the human risk of organic fibers (Cellulose, PVA, p-Aramid) as asbestos substitutes. Brussels, C2/GF/csteeop/Asbestos 17122002/D(02), 17 December. Ferrante D, Mirabelli D, Tunesi S, et al., 2015. Pleural mesothelioma and occupational and non-occupational asbestos exposure: a case-control study with quantitative risk assessment. Occup Environ Med, Published Online First: 11 Aug 2015 doi:10.1136/ oemed-2015-102803 Frank AL, Dodson RF, Williams MG, 1998. Carcinogenic implications of the lack of tremolite in UICC Reference Chrysotile. Am J Indust Med. 34: 314-317. GBD, 2015. Global, regional, and national comparative risk assessment of 79 behavioural, environmental and occupational, and metabolic risks or clusters of risk in 188 countries, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet. Published Online September 10, 2015. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)00128-2/fulltext GSC, 2010. Asbestos in Emergencies: Safer Handling and Breaking the Cycle. Harrison TCP, Levy SL, Patrick G, Pigott GH, Smith LL, 1999. Comparative hazards of chrysotile asbestos and its substitutes: A European perspective. Envir Hlth Perspect; 107: 607611. Helsinki Declaration, 2014. The Helsinki Declaration on Management and Elimination of Asbestos-Related Diseases. Adopted by the International Conference on Monitoring and Surveillance of Asbestos-Related Diseases, 10-13 February 2014, Finnish Institute of Occupational Health and International Commission on Occupational Heal6 References Summary of Facts: Throughout the last thirty years, scientific organizations and governmental agencies have thoroughly and meticulously reviewed extensive published data on asbestos and have concluded that all of its commercially viable fiber types (including amosite, anthophyllite, actinolite, chrysotile, crocidolite, and tremolite) cause disease and death resulting from asbestosis, lung cancer, mesothelioma and cancers of the larynx and ovary. There has not been identified any safe level of exposure to any form of asbestos; i.e. no threshold value below which all individuals would be risk-free of contracting an asbestos-related disease. Therefore, we support the immediate prohibition of the use of any form of asbestos-containing products, including those containing chrysotile, and call for their complete elimination. Fact 20 The World Health Organizations warns "Continued use of asbestos cement in the construction industry is a particular concern, because the workforce is large, it is difficult to control exposure and in-place materials have the potential to deteriorate and pose a risk to those carrying out alterations, maintenance and demolition. In its various applications, asbestos can be replaced by some fibre materials and other products that pose less or no risk to health” (WHO, 2006). Fact 19 The World Trade Organization “considers that the evidence before it tends to show that handling chrysotile-cement products constitutes a risk to health rather than the opposite. (emphasis added)” (WTO, 2001). Fact 18 “For roofing in remote locations, lightweight concrete tiles can be fabricated using cement, sand and gravel; and optionally, locally available plant fibers such as jute, hemp, sisal, palm nut, coconut coir, kenaf, and wood pulp. Galvanized iron roofing and clay tiles are other alternative materials. Substitutes for asbestos-cement pipe include ductile iron pipe, high-density polyethylene pipe, and metal-wire-reinforced concrete pipes.” (CR, 2015; WBG, 2011; WHO, 2009) 5 Fact 17 Strong evidence exists for the occurrence of non-occupational asbestos-related diseases as a result of domestic or environmental exposure to asbestos; in particular, among family members living with asbestos workers (NIOSH, 1995; Ferrante et al., 2015; Stayner, 2015). Fact 16 Acknowledging the human health hazard posed by asbestos and the environmental contamination following the destruction of asbestos-containing products after man-made or natural disasters, the World Bank Group, humanitarian organizations and the United Nations High Commissioner for Refugees have recommended that asbestos-containing materials including asbestos-cement building products should not be used in disaster relief (WBG, 2009; GSC, 2010; UNHCR, 2005). Fact 15 The recent study by Ferrante et al, 2015 “provides strong evidence of an association between pleural mesothelioma and the use of asbestos-cement roofing (OR=2.5, 95% CI 1.4 to 4.5) and pavement containing asbestos tailings (OR=3.6, 95% CI 1.4 to 9.2) (Ferrante et al., 2015; Stayner, 2015). (The next facts refer specifically to risks from asbestos-containing roofing products.) Fact 14 Labor federations including the International Trade Union Confederation (ITUC), the Building and Woodworkers International (BWI), the IndustriAll Global Union (IndustriAll) representing millions of trade union members worldwide have issued calls for asbestos bans, just transition programs for displaced workers and measures to protect affected workers and communities (ITUC, 2006; BWI, 2014; IndustriAll, 2014). Research on Cancer (IARC).” (Collegium Ramazzini, 2015; WHO, 2006; WHO, 2014) 4 Fact 13 In 2015, the Collegium Ramazzini (CR) reaffirmed its long-standing position that “well-documented availability of safer, cost-effective alternative materials” exist for asbestos, including chrysotile. The CR supports both the 2006 World Health Organization (WHO) position to cease using all types of asbestos and the 2014 WHO publication Chrysotile Asbestos that “all forms of asbestos, including chrysotile, are causally associated with an increased risk of cancer of the lung, larynx and ovary, mesothelioma and asbestosis” and “are in line with the recent evaluation by the International Agency for Fact 12 In 2014, a multi-disciplinary gathering of scientists meeting in Helsinki, Finland agreed that all types of asbestos cause cancer in man and “In order to prevent the epidemic of asbestos-related diseases from being repeated among workers and communities in the developing world, ceasing the use of new asbestos is essential” (Helsinki Declaration, 2014). Fact 11 On June 4, 2012 the Joint Policy Committee of the Societies of Epidemiology (JPC-SE) after “[A] rigorous review of the epidemiologic evidence confirms that all types of asbestos fibre are causally implicated in the development of various diseases and premature death.” The JPC-SE “Calls for a global ban on the mining, use, and export of all forms of asbestos” and further the JPCSE describes how “Similar to the tobacco industry, the asbestos industry has funded and manipulated research to manufacture findings favourable to its own interests. It has set up front organisations claiming to be expert scientific institutes, such as the Canadian Chrysotile Institute, the Russian Chrysotile Institute, and the Brazilian Chrysotile Institute. But, they are, in reality, lobby groups promoting the continued use of asbestos.” (JPC-SE, 2014) Fact 10 In October 2013, the International Commission of Occupational Health (ICOH) stated “There is sufficient evidence in humans for the carcinogenicity of all forms of asbestos (chrysotile, crocidolite, amosite, tremolite, actinolite and anthophylite)” (ICOH, 2013). 3 Fact 9 The International Labor Organization resolved that: “(a) the elimination of the future use of asbestos and the identification and proper management of asbestos currently in place are the most effective means to protect workers from asbestos exposure and to prevent future asbestosrelated diseases and deaths; and (b) the Asbestos Convention, 1986 (No. 162), should not be used to provide a justification for, or endorsement of, the continued use of asbestos” (IL0, 2006). Fact 8 Safer substitutes do exist for replacing chrysotile, thus eliminating the need for use of any type of asbestos in commerce (IPCS, 1998; Harrison et al., 1999; CSTEE, 2002; WBG, 2009; WHO, 2011; Collegium Ramazzini, 2015). Fact 7 In 2001 the World Trade Organization reported: “The Panel found too that the efficacy of “controlled use” is particularly doubtful for the building industry and for DIY [do-it-yourself] enthusiasts, which are the most important users of cement-based products containing chrysotile asbestos.” The WTO stated “… we note that the carcinogenicity of chrysotile fibres has been acknowledged for some time by international bodies. This carcinogenicity was confirmed by the experts consulted by the Panel, with respect to both lung cancers and mesotheliomas, even though the experts acknowledged that chrysotile is less likely to cause mesotheliomas than amphiboles. We also note that the experts confirmed that the types of cancer concerned had a mortality rate of close to 100 percent. We therefore consider that we have sufficient evidence that there is in fact a serious carcinogenic risk associated with the inhalation of chrysotile fibres” (WTO, 2001). including those exposed to chrysotile (Royal Commission, 1984; IARC, 1977, 2012; IPCS, 1998; IPCS 2004-2012; Collegium Ramazzini, 2015). 2 Fact 6 No threshold level of asbestos exposure has been established below which all individuals would be risk free of contracting asbestos-related diseases – Fact 5 Currently, at least 55 countries have banned the use of all forms of asbestos (IBAS, 2015). Fact 4 Latest data show the global burden of asbestos-related cancers estimated to be 194,000 deaths per year in 2013, up from 94,000 in 1990 (an increase of over 100%) with a disability-adjusted life-years (DALYs) burden of 3,402,000 – up 94% from 1990 and accounting for nearly two-thirds of the burden from all occupational carcinogens (GBD, 2015). Fact 3 Chrysotile has been shown to cause asbestosis, lung cancer, mesothelioma and cancers of the larynx and ovary (IPCS, 1998; WTO, 2001; IARC, 2012; WHO, 2014; Collegium Ramazzini, 2015). Fact 2 Chrysotile is frequently found contaminated with amphibole forms of asbestos, most commonly tremolite (IARC, 2012). However, the UICC Canadian chrysotile, which has been shown capable of causing disease, has not been found to contain tremolite (Frank et al., 1998). Fact 1 For the past two decades, chrysotile has been the only commercially mined form of asbestos being mass marketed. It has constituted over 95% of all asbestos marketed over the past century. The latest data show global use of chrysotile is around 2 million metric tons per year (USGS, 2013). The following facts represent knowledge concerning chrysotile asbestos, the only form of asbestos currently marketed. CHRYSOTILE ASBESTOS FACTS </div>
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-8984201872075938752016-04-28T06:05:00.002-07:002016-04-28T06:05:29.198-07:00International Workers Memorial Day 28 April 2016 REMEMBER THE DEAD - FIGHT FOR THE LIVING!Today is International Workers Memorial Day where we remember the dead and fight for the living! Across the globe services are being held to remember those who have lost their lives through occupational deaths, diseases and injuries. A few are highlighted below.<br />
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Memorial Day Brisbane, Queensland<br />
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ADFA (Asbestos Diseases Foundation Australia) at Sydney <span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;">International Day of Mourning for workers who have been injured or killed at work.</span><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;"> </span><br />
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International Workers Memorial Day, Adelaide<br />
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Asbestos Disease Awareness Organisation (ADAO) America<br />
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<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;">Day to remember the dead and fight for the rights that they and their family members. We invite everyone to Brasilia/Brazil.</span><br />
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Union Aid Abroad (APHEDA) <span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px;">We remember. We fight. Asbestos. Not here. Not anywhere.</span></div>
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<span style="background-color: white; font-size: 14px; line-height: 18px;"><span style="color: #141823; font-family: helvetica, arial, sans-serif;">http://28april.org/</span></span><br />
<span style="background-color: #f6f7f8; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 12px; line-height: 16.08px;">More info about events around the world - excellent link.</span><br />
<span style="background-color: whitesmoke; color: #2b2b2b; font-family: Lato, sans-serif; font-size: 16px; line-height: 24px;">Unions join international call for protecting workers’ health and safety in Argentina - See more at: http://28april.org/#sthash.R4WNhm4A.dpuf</span><br />
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<span style="background-color: whitesmoke; color: #2b2b2b; font-family: Lato, sans-serif; font-size: 16px; line-height: 24px;">For this 28th April, Italian trade union confederations CGIL, CISL and UIL will be running unitary actions to commemorate the victims of occupational accidents and diseases. The call for a national plan to free Italy from asbestos will be a key feature of the actions today. - See more at: http://28april.org/#sthash.R4WNhm4A.dpuf</span><br />
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The United States trade union confederation AFL-CIO launched its annual Death on the Job Report, showing the raising toll of occupational deaths, diseases and injuries for US workers. The report is available on the AFL-CIO website, along with infographics of highlights from the report.<a href="http://www.aflcio.org/Issues/Job-Safety/Death-on-the-Job-Report" style="border: 0px; color: #24890d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">http://www.aflcio.org/Issues/Job-Safety/Death-on-the-Job-Report</a></div>
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In addition, nearly 100 events are being held around the US to remember workers killed and injured on the job and to renew the fight for safe jobs. <a href="http://www.aflcio.org/Issues/Job-Safety/WorkersMemorialDay" style="border: 0px; color: #24890d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">http://www.aflcio.org/Issues/Job-Safety/WorkersMemorialDay</a> </div>
<span style="background-color: whitesmoke; color: #2b2b2b; font-family: Lato, sans-serif; font-size: 16px; line-height: 24px;">- See more at: http://28april.org/#sthash.R4WNhm4A.dpuf</span><br />
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Brussels, 28 April 2016 (ITUC Online): As ceremonies around the world take place on the<a href="http://28april.org/" style="border: 0px; color: #24890d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;"> International Commemoration Day for Dead and Injured Workers</a>, the ITUC has warned negligent employers of the consequences of putting workers’ lives at risk. Worldwide, one worker dies every 15 seconds due to occupational injury or illness.</div>
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Sharan Burrow, ITUC General Secretary, said “Over 2 million workers die needlessly every year because their workplaces are dusty, dirty and dangerous. The risks are as obvious as they are preventable, whether they are falls from height, crippling workloads or chemical exposure. Every single death represents an employer’s failure to act.”</div>
<span style="background-color: whitesmoke; color: #2b2b2b; font-family: Lato, sans-serif; font-size: 16px; line-height: 24px;">- See more at: http://28april.org/#sthash.R4WNhm4A.dpuf</span><br />
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There are over 2.3 million work-related deaths worldwide every year, over 6,000 every day or one every <a href="http://www.ilo.org/global/topics/safety-and-health-at-work/lang--en/index.htm" style="border: 0px; color: #24890d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">15 seconds</a>.</div>
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An estimated 660,000 workers die each year from occupational cancers, or over 1 every minute. <a href="http://www.cancerhazards.org/" style="border: 0px; color: #24890d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;">www.cancerhazards.org</a></div>
<span style="background-color: whitesmoke; color: #2b2b2b; font-family: Lato, sans-serif; font-size: 16px; line-height: 24px;">- See more at: http://28april.org/#sthash.R4WNhm4A.dpuf</span><br />
<span style="background-color: white; font-size: 14px; line-height: 18px;"><span style="color: #141823; font-family: helvetica, arial, sans-serif;"><br /></span></span>Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-79205608501552450572016-04-24T06:25:00.001-07:002016-04-24T06:30:14.917-07:00Lou's living hell and back with Mesothelioma!<br />
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I was eventually diagnosed in 2003 with peritoneal mesothelioma then in 2009 with pleura mesothelioma. Unfortunately the longer that you live with mesothelioma, the more side effects kick in with some being very severe and causing other hurdles in life to deal with.<br />
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I was brought back to life in April 2015 thanks to Keytruda kick starting my immune system to fight tumours/fluid and thankfully it did for 11.5 months and kept <span class="text_exposed_show">me alive with excellent quality of life. Prior to Keytruda my body was shutting down, on 24/7 oxygen, morphine for chronic pain, rapid weight loss .. 42 kilos and needing constant blood transfusions to stay alive.</span><br />
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<span class="text_exposed_show"><b><u>Rushed to hospital in a coma</u></b></span><br />
<span class="text_exposed_show">Thanks to many years of chemo and the steroid Dexamethasone I developed a severe reaction to my chemotherapy that I had on 18 March 2016. My body started to shut down, weight loss and I went into a coma (similar to a diabetic type 1 coma - Diabetic ketoacidosis is a potentially life-threatening complication in people with diabetes mellitus. It happens predominantly in those with type 1 diabetes DKA results from a shortage of insulin; in response the body switches to burning fatty acids and producing acidic ketone bodies that cause most of the symptoms and complications.</span><br />
<span class="text_exposed_show"></span><span class="text_exposed_show"><br />Keith found me on the floor near the bathroom at 7am Weds 23 March 2016 in a coma mumbling indistinct slight murmuring and I had lost control of all body fluids. He turned my head, lifted me on to the bed (these were the instructions over the phone from the ambulance who arrived within 30 minutes. One ambulance attendant stayed with me in the back of ambulance with oxygen and kept saying hang in there Louise. According to them another hour and it was goodbye world. Emergency department at John Fawkner hospital, Melbourne worked on me for over 24 hrs before I was transferred to the intensive care ward. It was touch and go if I would make it <b><u>AND I DID</u></b>, then began my recovery to get home. My oncologist Allan Zimet said it was the dexamethasone in the recent chemo that triggered all of this and it was thanks to Keytruda that some remained in my body to fight enough to wake up from this nightmare. I remained in hospital for 2 weeks relearning how to eat, walk, shower and regain strength to return home with Keith. As a result of the severe reaction to Dexamethasone, my pancreas no longer works so I am now a diabetic type 1 who needs to inject insulin every day.</span><br />
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<span class="text_exposed_show">(My 8 year old grand-daughter Ruby made this card for me while in the hospital. She said it is Nana being strong on the mountain! It gave me the strength to be strong and push myself that much harder while in there.)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUIqMbYE-f5CVml1Q50g0KNNuTOkxg-rZ3AdgjJXYA9ps6GesZiUOchBZUh9GyxxHrP8b4leiDXwA5re4oHYo7jl0ZMWzDq3MQgfFe2mGx1_WyFASsiXvzU1hzEvh2v6u-C0BaMAAIrsaD/s1600/%252893%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUIqMbYE-f5CVml1Q50g0KNNuTOkxg-rZ3AdgjJXYA9ps6GesZiUOchBZUh9GyxxHrP8b4leiDXwA5re4oHYo7jl0ZMWzDq3MQgfFe2mGx1_WyFASsiXvzU1hzEvh2v6u-C0BaMAAIrsaD/s320/%252893%2529.jpg" width="320" /></a></div>
<span class="text_exposed_show">This is always my motto!</span><br />
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</span><span class="text_exposed_show">The second week while in hospital I walked over to day chemo ward and visited 2 very special staff members who have been with me on my journey since 2003.</span><br />
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<span class="text_exposed_show">My beautiful and dear friend Sue drove 9 hours from Pambula, NSW to visit me on the weekend that I escaped from the hospital!</span><br />
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<span class="text_exposed_show">My dear friend Julie Stafford came to see me in the hospital bringing beautiful foods for me to enjoy. </span><br />
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<span class="text_exposed_show">For all the Meso Warriors around the world with a girl called <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=602012895" href="https://www.facebook.com/lou.williams.714">Lou Williams</a> on your minds. A beautiful morning spent with our girl. Lou reminds us all about the preciousness of the infinitesimal moments. What a treasure. What an inspiration. What a blessing to know and love her. Huge hugs Lou. For always. Julie</span><br />
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<span class="text_exposed_show">A follow up visit to see Allan, my bloods were way down in hospital a blood transfusion and further chemotherapy without the steroid Dexamethasone as I was very anaemic and haemoglobin way down. I have since had further chemotherapy last week as my bloods were really good. I have slowly found my way back to good health since leaving the hospital. No more blurred vision, and my weight and appetite has returned.</span><br />
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<span class="text_exposed_show">No keytruda as my lifeline anymore, however I will never never give up. After this chemotherapy regime, Keytruda is again a possibility for me. It is thanks to Keytruda that I am still alive and back living with quality of life and NO PAIN!</span><br />
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<span class="text_exposed_show">Thank you for your love and support and hope U didn't mind me leaning on U all! So many 1,000s of well wishes from around the world and with the love of my family and friends I pulled through from my coma and now I am ready to continue my support for others living with mesothelioma and their loved ones, to be a voice for those who have lost their life to deadly mesothelioma and their loved ones and to raise awareness and education on the deadly dangers of asbestos on a global scale in unity.</span><br />
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<span class="text_exposed_show">On a lighter note I recently celebrated another milestone - my birthday. We celebrated with 30 family members last Sunday at our home, then Keith and I spent 4 days at Barwon Heads, Victoria relaxing, unwinding and getting over side effects of recent chemotherapy!</span></div>
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<span class="text_exposed_show">We have lost so many beautiful global warriors to mesothelioma over the last few weeks. Mesothelioma is a cruel, brutal cancer and asbestos greed is the cause of it! We will continue to push for a worldwide ban on asbestos!</span></div>
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<span class="text_exposed_show">Lou Williams</span><br />
<span class="text_exposed_show">Social Media Voice (ADFA) Asbestos Diseases Foundation Australia</span><br />
<span class="text_exposed_show">Australian National Director (GBAN) Global Ban Asbestos Network</span><br />
<span class="text_exposed_show">Email: eradicateasbestos@gmail.com</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-56991122310510092722016-04-06T17:45:00.001-07:002016-04-06T17:45:25.712-07:00Trevor Grant, Mesothelioma warrior tells his story How Keytruda gave me back my life!<h4 class="type-weak">
Petition update</h4>
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HOW KEYTRUDA GAVE ME BACK MY LIFE...Trevor Grant, 64 yrs, Melbourne, Victoria, Australia</h2>
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<strong class="">Lou (Louise) Williams</strong><div class="type-weak type-ellipsis">
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<span class="no-wrap">7 Apr 2016 — </span>I
have come to know Trevor through his diagnosis of pleural mesothelioma
in March 2015. Recently he shared his story on ABC 7.30pm Report on
Television and ABC website. <br />Hi Lou,<br />I have mesothelioma and I'm
writing to let you know I've been following for some time your admirable
fight to get Keytruda on the PBS, along with your own personal
situation. I have been on Keytruda since last November and it has made a
huge difference to me. I'm also happy for you to use the following
information. <br />Best wishes, Trevor Grant<br />(We have spoken at length via phone and plan to meet up soon).<br />Trevor's
story: Three weeks after my diagnosis I began chemotherapy
(cisplatin/pemeltrexed). I had six sessions -- one every three weeks --
over 18 weeks. Although my relative fitness helped me get through the
first three sessions, I struggled with the final three. I was pretty
debilitated towards the end and needed a blood transfusion to get
through the final treatment. I had also had a lot of pain in my chest
and right arm. I couldn't walk more than 100 metres without the pain
kicking in. I was also on strong pain medication.<br />The chemo did its
job. My tumour shrank but the pain persisted. Then two months later the
tumour had grown back and the pain was as bad as ever.<br /><br />This is
when Keytruda came into my life. After one session the pain had
subsided, and by two, I'd taken myself off all pain medication. Suddenly
I was able to walk as far as I liked. After my sixth session, a scan
showed that my tumour had shrunk quite significantly. I've now had seven
sessions and I'm living a fit and healthy life. I have no no
side-effects. I do the gardening, walk for up to two hours a day -- the
dog is always more buggered than me -- and I swim when I'm not walking.<br /><br />When
I was doing chemotherapy I lived in a dressing gown and was never far
away from the toilet bowl, or a plastic bucket. I couldn't walk more
than 100 metres without pain and struggled to go anywhere. In other
words I was alive but I had no life. Keytruda has given me back my life.
Whatever happens in the future, I've been able to spend the past five
months living normally. That's already a huge bonus.<br /><br />The drawback
is that, because Keytruda is not on the PBS for mesothelioma, I have to
pay $7000 per treatment, although I was able to get three free ones
under a cost-share program. But that's it for the freebies. To stay
alive I will have to pay as much as $120,000 a year. I find this grossly
unfair, given that the disease I have is due to corporate greed and
government neglect. And what's worse is that hundreds of people with
mesothelioma simply can't afford it. I'm lucky that I have a pay-out
from my court case to allow me to access it. <br /><br />Thankfully
melanoma sufferers are able to access Keytruda on the PBS, and so many
are doing well. ( I know. I sit next to them at the day oncology ward.
The difference is that they pay about $40 for the same treatment that
costs me $7000. It seems pretty unfair to me). It's time mesothelioma
and other cancer sufferers were afforded the same rights.</div>
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https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug/u/16123511</div>
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Please continue to sign my petition to get Keytruda on our Australian PBS (Pharmaceutical Benefits Scheme) for Mesothelioma and 31 other rare cancers it is showing promise with.</div>
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If you are having trouble copyng the above link to open the petition please go on to www.change.org</div>
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Search: Keytruda Mesothelioma PBS Lou Williams</div>
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Lou's email eradicateasbestos@gmail.com</div>
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Another blog coming within next few days and an update on what has been happening in my life since my last blog.</div>
Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-60492924012034250542016-03-18T23:56:00.002-07:002016-03-19T00:07:20.708-07:00Mesothelioma progression and a kick up its butt!I just want to write honestly about my mesothelioma how aggressive, brutal and painful it can be.<br />
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No one person deserves to be diagnosed with this awful asbestos cancer. We did not cause it - thanks to human greed, bribes and unfortunately the need for cheap housing in certain countries many are exploited by the likes of Russia 'mafia' who blackmail poorer countries with bribes, and selling asbestos very cheaply so these countries can house many thousands of their people by using asbestos for roof sheeting, wall covering .... . This is just one example of corruption. Just imagine in these countries how many innocent people are yet to be diagnosed with an asbestos related disease in 10 to 50 years time!<br />
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After 10 years of extreme chronic fatigue I was finally diagnosed in 2003 with peritoneal mesothelioma. One day I developed an unbelievable pain in the back lower area coming through to my groin area. After a day it went away, so back to my doctor who referred me to a specialist. He requested through pathology a biopsy of a large hard area that turned out to be a golfball sized tumour. I remember the pathologist who performed this removal of fluid saying 'mmm very weird'. I had surgery for removal of tumours in my stomach, diaphragm, abdomen and pelvis linings area and a hot chemo flush. At this stage my specialist was looking for ovarian cancer.<br />
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2 days later in his office he said with a very sad face, "I am very sorry to say it is the worst cancer that you could get - mes .. o ...". I said "not mesothelioma - asbestos cancer!" "He said of U know of this cancer!!" "Yes, my father at 54 yrs died of this cancer in 1985."<br />
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Keith and I went home, lay on the bed for over 2 hours hugging each other in total shock. How could I get this cancer as dad worked with it, I did not. My close girlfriend broke the ice by knocking on the door with a plate of my favourite muffins, so with a cuppa, chat and Keith on the phone trying to reply to so many concerned family and friends as to our outcome we were forced into reality and dealing with the truth.<br />
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I took control of my cancer - I did not want to die. I will answer this section in another blog as it is important to tell this story and why I am still here today.<br />
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I had an appointment with an oncologist, Dr Allan Zimet of which he came highly recommended.<br />
At out meeting I asked if he had any long term patients with mesothelioma - his reply yes I currently have 3 - a 5 yr, 2 x 8 yr patients. THIS WAS GOOD ENOUGH FOR ME - I knew that I was in the best hands. I asked Dr Zimet how long did I have. He said a couple of months without treatment, maybe with treatment a few months to 18 months.<br />
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I commenced the chemo gemzidibine (gemzar) and cisplatin. I helped my body's immune system with antioxidants, vegetable juices, cancer retreats, thought field therapy and for the first few years having a no sugar, no gluten and no wheat diet.<br />
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I lived well with peritonal mesothelioma. In 2009 I was diagnosed with pleural mesothelioma on the right side. I had VATS, drainage and a pleurodesis in hospital over a period of 3 weeks stay.<br />
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Followed by chemo alimta/cisplatin regime.<br />
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Altogether 8 different chemo regimes, in Dec 2014 my body was fading, tumours growing and needing fortnightly blood transfusions to stay alive.<br />
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January 2015 - my oncologist said 'Louise I am sorry there is nothing we can do - your body is shutting down'<br />
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Jan/Feb 2015 - I underwent 14 days of radiation into a massive tumour in my stomach that was dangerously close to arteries. If this were to burst it would go to my heart and bingo - dead!<br />
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April 2015 - Dr Zimet said to me there is an immunotherapy drug showing good promise in some cases for end of life mesothelioma patients. However it will cost me $7,100 per dose, every 3 weeks.<br />
Keith and I went home and after the Easter weekend rang Dr Zimet and said to please go ahead. I DID NOT WANT TO DIE.<br />
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Every 3 weeks I have had an overnight infusion of Keytruda in hospital. Up until 24 Feb 2016 I have had many months of excellent quality of life.<br />
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A scan on 24 Feb 2016 showed NO FLUID, however it did show new tumours growing inside both lungs.<br />
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24 Feb to 16 March, I experienced caving in of the chest upon exertion, blurred vision and extreme dryness of face, throat and skin. I craved iced water and lime squeezed into it. Also coffee milkshakes! Swallowing a bit hard needing a drink with it. Weight loss of 5 kilos from 55 to 50 kilos.<br />
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16 March 2016 into hospital for my overnight Keytruda infusion. I had the usual blood tests prior to Keytruda - and MY BLOODS WERE EXCELLENT!<br />
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However my chemo nurse noticed my distressed appearance and notified Dr Zimet. He ordered an immediate CT scan of abdo, pelvis and chest that evening.<br />
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17 March 2016 Dr Zimet did his rounds at 6.15am. He said unfortunately the big growth tumour in the diaphragm is growing, and the tumours in the lungs are joining up and there is a new growth above the right lung. He wanted me to stay another night and have an MRI of the brain to see if the mesothelioma tumours are spreading to the brain (blurred vision etc). I said I didn't want to stay another night in hospital and he smiled and said "Lou I want to work out a plan before the weekend."<br />
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I had the 25 minute claustrophobia, head pounding MRI and waited for Dr Zimet to do his rounds the next morning.<br />
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18 March 2016 - 6.30am Dr Zimet did his patient rounds. MRI clear! Even though Keytruda has stopped shrinking my tumours, given me quality of life and it has continued to shrink the fluid, no oxygen, NO PAIN and MY BLOODS ARE EXCELLENT, he has taken me off Keytruda and has started me on a weekly course of chemotherapy (Vinorerlbine/Carboplatin) to hopefully stabilise and maybe shrink the tumours.<br />
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I had my first dose of chemo yesterday and was out of the hospital by 3.30pm headed for home!<br />
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Every day that I was in hospital Keith (my husband) was by my side. He would leave home 4.45am on the Thursday and Friday in the hope of being there when Dr Zimet did his rounds and be there with me when Dr Zimet discussed my case. Unfortunately both days Keith walked in the hospital 5 minutes later! He stayed the 3 days until well after 7pm. Thank you to my wonderful sister in law Cheryl who came into the hospital on the Thursday as us 2 escaped the hospital to a little Italian restaurant where we shared a plate of pasta!<br />
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<b>I AM NOT GIVING UP! I have too much work to do in helping others get through this nightmare of living with mesothelioma. Helping to ban asbestos globally. Get Keytruda on the PBS fast tracked and my playing a global part in advocacy, education and support.</b><br />
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<b>I just want to say thanks to Dr Zimet and Keytruda for my life line when my body was as close to a couple of days/weeks in shutting down in April 2015 when I was on 24/7 oxygen and morphine for unbearable pain. I was on Keytruda every 3 weeks for 11 months, in that time I received excellent quality of life (from June 2015 onwards), significant tumour shrinkage and fluid too, went off oxygen and best of all NO PAIN and it gave me an excellent immune system back. Without Keytruda I would not be able to have further treatment of chemotherapy.</b><br />
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<b>Never give up, living with Mesothelioma is not easy for patient and family. Deal with what happens in the moment and let the universe take care of the big picture.</b><br />
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Thinking of all warriors doing it tough at the time. <br />
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<b>Please contact me anytime: eradicateasbestos@gmail.com</b><br />
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com1tag:blogger.com,1999:blog-5133511194592631204.post-9764110991517577202016-03-02T16:30:00.001-08:002016-03-02T16:30:38.514-08:00Keytruda no. 17 and successful meeting with PBAC to fast track Keytruda on to PBS.Hi all<br />
Tuesday 23 Feb we returned from our Tasmanian holiday/retreat where we visit to regain strength to fight cancer by walking on the beach, relaxing looking out to sea and the lighthouse, reading a good book, meditating and spending time with good friends. By doing this it focuses our mind and healing to calm the brain and immune system and to forget about medical appointments/treatments upon our return.<br />
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We flew in to Melbourne and by 10pm home. I made an orange cake and went to bed at midnight. Weds 24 Feb early start to Melbourne, an appointment with my oncologist Dr Allan Zimet to discuss results of recent scan - all okay as reported in previous blog posting. Fairy floss nodules/tumours inside the lungs otherwise all okay and continuing to have good quality of life while being on Keytruda.<br />
<br />
Across to Epworth hospital for overnight admittance of Keytruda infusion. I escaped with Keith for lunch and a rest in Fitzroy Gardens where we both laid on the grass under trees and went to sleep for an hour or so as we were very tired from our late travel the night before! <br />
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<br />Keytruda later that evening and I wandered around the hospital for a couple of hours. I was awake 5am Thursday and Dr Zimet did his hospital rounds 6.15am and I was discharged by 6.30am! <br />
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A brisk walk and a tram ride to my daughter Jo's place to surprise her and family. Jo turned a milestone birthday and I was lucky enough to be able to share her birthday that day and babysit the kids that evening while Jo/David went out to dinner to celebrate. We sang happy birthday and ate my orange cake that 2 yr old little grandson Oliver helped decorate.<br />
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Home Friday and last few days I have been fatigued, due to Keytruda infusion no. 17 and also our weather has been quite hot and humid.<br />
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<u><b>Keytruda successful meeting with PBAC to fast track Keytruda on to PBS. </b></u><br />
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug/u/15689852?recruiter=55915192&utm_source=share_update&utm_medium=facebook&utm_campaign=facebook_link<br />
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Tuesday 1 March 2016, I had a very successful phone conference link up
with Professor Andrew Wilson, Chairman of PBAC (Pharmaceutical Benefits
Advisory Committee) and the Secretary Greg O'Toole to discuss my
petition and fast tracking of Keytruda on to our Australian PBS
(Pharmaceutical Benefits Scheme) which will mean the cost of Keytruda
will reduce the current costs of $5,000 to $9,000 per Keytruda infusion
and currently the patient has to fund this, to the Government PBS at a
cost of $6 to $37 per patient per infusion of Keytruda. <br /><br />A HUGE
decrease in costs and a decision that will enable many more patients to
access Keytruda for mesothelioma and other rare cancers.<br /><br />Prof
Wilson was aware of my petition and the need to fast track Keytruda and
other immunotherapy drugs on to our PBS. Currently most new drugs have
to go through years of testings and trials before they are approved for
the PBS however in the case of Keytruda it will be assessed on its
merits and on real life cases including mine and others who have had
access to Keytruda.<br /><br />He did say that PBAC have not as yet received
a submission from MSD (Merck) pharmaceutical company who produce
Keytruda. When they do receive a submission from MSD they will decide
on its merits. <br /><br />They are aware of limitations within PBAC and
there are 2 processes to make decisions when these applications come to
the committee. He mentioned the long process and said Keytruda would
not have to go through this process, and they understand it can not go
through the same sort of level and trials as other drugs, in particular
for RLC including mesothelioma as there is not enough data.<br /><br />So it is back to MSD to ask them to please put a submission in to PBAC. <br /><br />PBAC once they decide that the drug is beneficial and safe, then they will advise the health minister to put it on the PBS.<br /><br />I
think my phone conference link up was very successful and it is now
time to continue lobbying MSD, and your local federal members of
Parliament to write to the health minister to put Keytruda on to our
PBS.<br /><br />We are getting closer to fast tracking of Keytruda on to our PBS!<br />
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-51397988608542887282016-02-16T04:21:00.001-08:002016-02-16T04:21:56.882-08:00Keytruda infusion, scan and Tasmania!Hi all<br />
2 week's ago just after my no.15, or was it no 16 Keytruda infusion I did a lengthy blog and forgot to save as I went along - guess what happened! Yes my blog disappeared!<br />
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I had CT scans just prior to Keytruda on Feb 3 then blood tests before my admittance overnight for Keytruda. Blood tests were fine and my <span class="_Tgc"><b>Haemoglobin</b> (an iron-containing protein in red blood cells) was 126, considering this time last year it hovered around 76 requiring fortnightly blood transfusions it is amazing thanks to Keytruda that it is so healthy! My check in to the Epworth hospital oncology ward for Keytruda went smoothly, I saw the chemo/immune nurse and left the hospital for a lovely light lunch with Keith at a little French cafe, Laurent (really nice baguettes and coffee), within walking distance to the hospital. A tram ride into the city and walk around the beautiful old shopping malls for 2 hours before heading back to my hospital room. My reason for escaping the hospital for a few hours is the fact that I am so WELL thanks to Keytruda!</span><br />
<span class="_Tgc"><br /></span>
<span class="_Tgc">Into bed, immune/chemo nurse found a vein in my arm for a Cannula (</span><span>thin tube inserted into a vein or body cavity to administer medication, drain off fluid, or insert a surgical instrument) insertion for my Keytruda infusion. A couple of tablets - antihistamine, emend and panadol then saline flush followed by Keytruda for 30 minutes with another saline flush. All up about an hour! A rest for another hour then out to a light pizza dinner with Keith until about 8.30pm. Back to bed, catch up on some computer work helping others worldwide navigate the mesothelioma trail, Keytruda emails and posting news items on deadly asbestos globally. Unfortunately as limited computer access in the hospital this is all that I can do, plus a couple of phone calls and it is midnight! Just in time for the nurse to check my blood pressure and turn the light out!</span><br />
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<span>4.47am woken by the night nurse to check my blood pressure! My oncologist Dr Allan Zimet did his rounds at 6.15am (I had showered, dressed and tidied my room including stripping the sheets off the bed (again thanks to Keytruda I am eager to be discharged as I feel so healthy and well, and by helping to tidy my room it will be a quicker turnaround for the cleaner to clean the room for next patient!)</span><br />
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<span>Dr Zimet asked me if I was having any problems with breathing. My reply was yes I am noticing slight shrinkage of chest at times. I asked Dr Zimet if he had seen my scan of yesterday. He had read the report however had not seen the scan as yet. "Appears to be nodules (tumours) in the lung(s)". I, myself, have since received a copy of the scan and there is a mixed bag as looks like some shrinkage and stable too of tumours and fluid. We both agreed that Keytruda is still working and it is keeping me alive, healthy and fighting fit! We will see Dr Zimet on Weds 24 Feb and review the actual pictures of scans prior to my next Keytruda infusion that night! If Keytruda stopped working for me tomorrow - I have had my life back with quality and living to the full, because when I commenced Keytruda early in April 2015 my body was shutting down, 24/7 oxygen, weight 42 kilos and on morphine for heavy pain and at the time I was within a few days from death's door. </span><br />
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<span>Upon my 7.30am discharge, I walked through the beautiful leafy suburb of East Melbourne, through Fitzroy and Treasury Gardens then all the way up Collins Street to Southern Cross railway station where I caught my hour long train home. 1.5 hours of a brisk walk and the train ride home, by the time I walked in our front door I was pretty tired, half of this is due to my lack of sleep in the hospital and the other half to Keytruda fatigue for a couple of days. </span><br />
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<span><u>Tasmania </u></span><br />
<span><b>KEYTRUDA IS STILL WORKING -</b> we have been in Tasmania for nearly 2 week's now enjoying walking along the beach, looking out to sea at the gentle waves flowing in and out over the sand and looking across to Low Head lighthouse with the her light flashing to warn passing ships - so peaceful, relaxing and perfect for healing! It is thanks to dear friends who are minding our home and Charlie (our siamese cat) that we can be here and recharge our immune systems to fight cancer.</span><br />
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Happy birthday Sandra! Enjoying dinner with friends at Riviera Hotel, Beauty Point, Tasmania.</div>
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Rotunda Cataract Gorge</div>
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Beautiful Cataract Gorge, Launceston, Tasmania. Just walked along the gorge uphill!</div>
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Looking out to sea, sending big hugs to all who need them!<br /><span><a class="share_action_link _5f9b" data-ft="{ "tn": "J", "type": 25 }" href="https://www.facebook.com/lou.williams.714#" title="Send this to friends or post it on your Timeline."><span></span></a></span><br />
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<span>Valentine's weekend we shared a Swiss chalet at Grindelwald, Launceston, Tasmania overlooking beautiful Lake Louise. Grindelwald is modelled on the real Grindelwald, Switzerland. Saturday evening with friends we enjoyed a meal at Rosevears waterfront tavern s</span>ituated on the picturesque Tamar River in Tasmania’s Tamar Valley. A fabulous dinner with jazz singer background music.<br />
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Swiss chalet where we have enjoyed Valentine's weekend with friends.<br />
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Valentine's day we enjoyed a champagne breakfast at our chalet then a lovely luncheon outside on the terrace with friends including another mesothelioma warrior Rohan and his lovely wife Barb. Gabby their 7 year old golden labrador joined us for lunch - Gabby enjoyed a boiled egg and cheese!<br />
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Monday a visit to Launceston's Cataract Gorge - walk along the gorge and a pitstop at the outdoor cafe with a visit from the resident peacocks! That night out with more friends to the Riviera Hotel, Beauty Point and to celebrate Sandra's birthday.<br />
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Today a drive 20 mins away to Beauty Point, River cafe sitting outside overlooking an amazing view of the river. Very relaxing sitting there! Home to a walk along the beach, and a meal at home here of Tasmanian salmon that I lightly grilled.<br />
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Why am I writing all of what we are doing while in Tasmania? It is to highlight my quality of life to be able to enjoy living free of pain thanks to Keytruda. For me, without Keytruda my life had almost ended. My life last April consisted of my bed and painfully with the aid of my husband Keith to sitting in a comfy chair in the living room for an hour or so before I had to go and lie down as I was so weak, in pain and needed 24/7 oxygen.<br />
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<b><u>Keytruda fast track on PBS petition update </u></b><br />
Below is my latest petition update. In this update, a dear friend, Kylie sharing her story of her young husband, Nick who has esophageal cancer and as unfortunately all normal avenues of treatments have failed. Now he has been given a life line of Keytruda.<br />
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https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug/u/15480734<br />
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Nick aged 40 years, Tasmania, Esophageal cancer given lifeline of Keytruda</h2>
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<strong class="">Lou (Louise) Williams</strong><div class="type-weak type-ellipsis">
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<span class="no-wrap">16 Feb 2016 — </span>(Lou's
comment: I have known Kylie for 15 years. Kylie bravely is sharing
their journey with cancer. Nick has just had Keytruda infusion no. 2)<br /><br />In
January 2015 my husband, Nick, at 39 years of age was diagnosed with
stage IV esophageal adenocarcinoma caused by reflux. Since diagnosis
Nick has had multiple types of chemotherapy with varying levels of
success, each time though the cancer takes over gaining momentum again. <br /><br />We
are now at the bottom of the barrel so to speak, with limited options
left. Keytruda is the only option offering any real hope and quality of
life for Nick. However, Keytruda is not on the PBS and is extremely
expensive, costing thousands of dollars per treatment every three weeks.
Patients with this disease and their families suffer enough, without
having the financial burden and stress added to this associated with
working out how to fund treatments, so they can be given the best
possible chance to prolong their life with some kind of quality. <br /><br />Keytruda needs to be fast tracked now to help patients like my husband.</div>
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-1241943408153950802016-01-27T05:08:00.000-08:002016-01-27T05:08:03.136-08:00We say farewell to 2 Aussie warriors who have lost their lives to deadly mesothelioma.<div class="_5pbx userContent" data-ft="{"tn":"K"}" id="js_4">
You are a wonderful teacher of life. You remind me that ...<br />
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>The above verse is so true! My beautiful friend Linda Reinstein <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=250335031707257" href="https://www.facebook.com/pages/Co-Founder/250335031707257">Co-Founder</a> at <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=158371317516896" href="https://www.facebook.com/gbanAsbestos/">Global Ban Asbestos Network (GBAN)</a> and <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=109861219064569" href="https://www.facebook.com/pages/Co-FounderCEO/109861219064569">Co-Founder/CEO</a> at <a class="profileLink" data-hovercard="/ajax/hovercard/page.php?id=162654027093114" href="https://www.facebook.com/ADAOAsbestos/">Asbestos Disease Awareness Organization (ADAO)</a> wrote this on my timeline/facebook page today.<br />
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I always look for rainbows and for stars in life! All we have is the moment we are in! Most people when they are younger think they have their life ahead of them ... it is true however when you are faced with an aggressive cancer such as mesothelioma, death stares back at you every day and you live life in the moment of time! I don't plan too much in the future because I do not know what it holds for me and to be honest, I have come to accept this and just live my life enjoying each and every day. I look for the rainbows in each day and the stars when darkness such as tonight of the passing of 2 beautiful warriors who have lost their life to asbestos greed. Both Aussies living with mesothelioma, their pain and suffering has come to an end and they are now resting in peace - their lives cut short thanks to deadly mesothelioma. Their families are torn apart - they have to live without their loved ones/their soulmates, dads, grandfathers ... . <br />
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Nothing halts mesothelioma in its tracks .... yes treatment is all palliative ... surgery, chemo, radiation and now immunotherapy all help to keep it at bay for a little while, shrinkage of tumours and stability we aim for and quality of life while living with mesothelioma. However when it rears its ugly head and takes a hold their is no stopping it! It is brutal, aggressive, painful and deadly.<br />
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Keytruda has shown promise with mesothelioma and other rare cancers, so why is it so hard to get it fast tracked on to our PBS (Pharmaceutical Benefits Scheme) in Australia? It has shown that it can work in melanoma cancer and has been on the PBS since September 2015 for this cancer only. In America it has been approved on the FDA for lung cancer ... surely mesothelioma is the next step forward for Keytruda to be approved! My petition with over 7,000 signatures is gaining momentum and my appointment with the health minister, the Honourable Sussan Ley is about to take place. The next step is getting MSD (Merck) to make an application to PBAC for Keytruda to be approved by the health minister for the PBS. IT WILL HAPPEN SOON!!<br />
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My heart goes out to those families who have lost their loved ones to mesothelioma. To Peter and Pete's families my heart is with you. <br />
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To others living with mesothelioma and who are not doing too well at the moment - big hugs coming your way.<br />
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Lou<br />
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email eradicateasbestos@gmail.com<br />
#mesothelioma53<br />
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-42338439318235141852016-01-21T02:27:00.000-08:002016-01-21T02:27:14.533-08:00Western Australian man caught dumping asbestos illegally fined!<b>20 January 2016 as reported by Channel 9 News, Perth, Western Australia, Australia</b><br />
http://www.9news.com.au/national/2016/01/20/19/02/food-receipt-helps-nab-wa-asbestos-dumper<br />
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<b><u>A fast food receipt has led to a Perth man being fined $10,000 for illegally dumping fencing containing asbestos at Korung National Park.</u></b><br />
Samuel Michael Gossage, 27, was identified after Department of Environment regulation investigators found a fast food receipt at the dumping site and cross-checked the time of purchase with the eatery's drive-through security cameras. Investigators also checked footage from an onsite concealed camera that captured the incident in June last year.<br />
<b>Gossage was fined this week in Armadale Magistrates Court and was also ordered to pay $1284 in clean-up costs and $660</b> in court costs.<br />
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<b>Lou's comment:</b> Excellent detective work by Department of Environment and following up with heavy fines. Hopefully this will be the start of more dumpers who illegally dispose of asbestos waste being caught, fined and possible jail sentences if appropriate! These dumpers are exposing many innocent people to asbestos fibres when they break down and become airborne. They also have no regard for the health of the general public nor their own health. They think that they will get away with the dumping and save expensive costs of disposing the asbestos waste legally.<br />
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<b>21 January 2016, Liverpool, Sydney, New South Wales, Australia</b><br />
http://www.abc.net.au/news/2016-01-20/asbestos-contamination-fears-at-serbian-club-in-liverpool/7102404<br />
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<b><u>Liverpool community fears asbestos contamination from illegal landfill.</u></b><br />
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A Serbian leader says he is worried about the health of his community members after asbestos was found near a cultural club in Liverpool local government area in south-western Sydney.</div>
David Milovanovic, president of the St Sava Serbian Club in Middleton Grange, told the ABC he had received an email notifying them of soil containing asbestos material on a public property along Hall Circuit.<br />
Last year, the ABC reported the EPA was investigating <a href="http://www.abc.net.au/news/2015-11-11/asbestos-contaminated-soil-could-affect-22-sites-in-liverpool/6931892" target="_self" title="">up to 15 sites that could be affected by the contaminated fill, which could have come from Liverpool Council's soil storage facility, the Western Depot at Kemps Creek</a>.<br />
Liverpool councillors passed a motion at an extraordinary meeting in November 2015 to <a href="http://www.abc.net.au/news/2015-11-22/liverpool-council-accused-of-ignoring-asbestos-problem/6961690" target="_self" title="">provide medical checks for staff who believe they may have been affected by the contaminated fill</a>. <br />
Mr Milovanovic said he was shocked that there was asbestos in the area.<br />
He said the club had not mowed its lawns for more than four months due to asbestos fears.<br />
"There were rumours of asbestos in the area, so we were concerned," Mr Milovanovic said.<br />
He said the club had suffered financially due to the contamination because they were planning to hold a community festival at the club at the end of January.<br />
"We will have to hold it on the concrete which means we can't fit as many people as before," he said.<br />
"Now we're a little bit afraid if it was contaminated that we may have unknowingly exposed kids.<br />
"On a weekly basis we get between 100 to 150 people, we also host functions for multicultural communities that surround the club, which has between 500 to 600 people."<br />
Mr Milovanovic said he needed support from Liverpool Council and local authorities.<br />
"We can't afford the expensive tests, to test the soil or land around it," he said.<br />
Liverpool Council CEO Carl Wulff said in a statement to the ABC that the asbestos near the Serbian club was dumped illegally.<br />
"The illegally dumped material, located on the corner of Stante Close and Hall Circuit, will be removed immediately after Sydney Water works are completed," Mr Wulff said.<br />
"There is no danger to guests or employees of the club, as the material is covered, not airborne and will be removed by experts."<br />
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EPA continuing to investigate the contamination</h2>
The Environment Protection Authority (EPA) told the ABC the investigation is continuing into the 15 council work sites.<br />
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<a href="http://www.abc.net.au/news/2016-01-20/asbestos-1/7102776"><img alt="Asbestos 1" height="227" src="http://www.abc.net.au/news/image/7102026-3x2-340x227.jpg" title="Asbestos 1" width="340" /></a><a class="inline-caption" href="http://www.abc.net.au/news/2016-01-20/asbestos-1/7102776"><strong> Photo:</strong> Members of the St Sava Serbian Club in Middleton Grange say they are shocked by the discovery of asbestos contamination. <span class="source">(ABC News: Mohamed Taha)</span> </a></div>
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"In relation to each site under investigation, the EPA has directed the council to make them safe, communicate with any neighbours and remediate them," an EPA spokesperson said.<br />
Liverpool Councillor Peter Ristevski said there were potentially more areas of soil surrounding the club which could be contaminated.<br />
"It's just not one area, they're actually surrounded by soil that could or could not be contaminated," he said.<br />
"They definitely need answers now, if there is a contaminated section there, I'm sure it is contaminated as well."<br />
Cr Ristevski said the council needed to be more proactive to manage the overall asbestos issue.<br />
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Asbestos campaigner calls on Liverpool Council to get serious</h2>
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Barry Robson, president of the Asbestos Diseases Foundation of Australia, said he was outraged that Liverpool Council was not treating the problem as a public hazard.</h2>
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<a href="http://www.abc.net.au/news/2016-01-20/barry-robson/7103056"><img alt="Barry Robson" height="227" src="http://www.abc.net.au/news/image/7103038-3x2-340x227.jpg" title="Barry Robson" width="340" /></a><a class="inline-caption" href="http://www.abc.net.au/news/2016-01-20/barry-robson/7103056"><strong> Photo:</strong> President of the Asbestos Diseases Foundation Barry Robson has criticised Liverpool Council's approach to asbestos contamination. <span class="source">(ABC News: Mohamed Taha)</span> </a></div>
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"The reports I've seen so far leave me a little bit disturbed that the council is treating this in a laissez faire manner, that they don't see it as a hazard," he said.<br />
"The problem is once you disturb asbestos and it does become airborne, that's when it becomes highly, highly dangerous. It raises issues of public safety."<br />
Mr Robson, who has been campaigning for asbestos testing and awareness for years, said solid forms of asbestos are dangerous once they are disturbed.<br />
"The CEO or possibly the council are in denial about this potential safety hazard to the public," he said.<br />
"It's fine to say it's there in solid form but the minute you disturb it, then it becomes highly dangerous.<br />
"If it's in soil and you put a lawnmower over the top of it, it becomes airborne."<br />
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19 Jan 2016 - Victoria, Australia<br /><a href="http://www.starweekly.com.au/news/make-asbestos-removal-easier/" rel="nofollow" target="_blank">http://www.starweekly.com.au/…/make-asbestos-removal-easier/</a><br /> <br />
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A Gisborne woman, who has been fighting mesothelioma for more than a decade, believes home renovators shouldn’t have to pay to have asbestos professionally removed and disposed. Under current laws, people who find the deadly building material in their homes face expensive removal and disposal costs.<br /> Lou Williams, despite her own ill health, has spent many years fighting on behalf o<span class="text_exposed_show">f others battling lung cancer caused by asbestos exposure. She says disposal costs should be heavily subsidised. ‘‘Until that happens, we will have more and more people exposed, including their families,’’ Mrs Williams said. In 1985, her father, who worked in the building industry, was diagnosed with pleural mesothelioma. He died six months later, aged 54.<br /> In 2003, Mrs Williams, then 47, was diagnosed with peritoneal mesothelioma. In 2009, she was diagnosed also with pleural mesothelioma. Large tumours were removed and she underwent chemotherapy before starting on a new drug early last year.<br /> While asbestos was completely outlawed in 2003, Mrs Williams said it continued to wreak a devastating toll.<br /> And those most at risk were the growing army of do-it-yourself renovators, she added. ‘‘All it takes is one speck.’’</span><br />
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The Asbestos Diseases Society of Australia said repairs and renovations could release millions of fibres.</div>
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<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><b>Lou's comment</b><span>: Invisible asbestos fibres can be deadly when doing your own renovations! Leave it to the asbestos removalist to remove any asbestos from your home. It simply is not worth the risk of innocently exposing yourself and family. Asbestos fibres once inhaled can stay dormant for 10 to 40 yrs before you maybe diagnosed with deadly mesothelioma asbestos cancer. It is a very painful, brutal and aggressive cancer!</span></span></span><br />
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As you can above, asbestos is still a huge problem in Australia as it is globally. Take a look below at an article from America - <b><u>asbestos is A HUGE PROBLEM GLOBALLY NOT JUST IN AUSTRALIA.</u></b><br />
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14 January 2016 - Florida, USA<br />
http://www.publicintegrity.org/2015/12/17/19026/upended-america-s-third-wave-asbestos-disease?<br />
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<u><b>Upended by America’s ‘third wave’ of asbestos disease.</b></u><br />
<u></u><u><b><br />Life was going smoothly for Kris Penny. Then he got a rare type of cancer called mesothelioma. Penny is 39 years old. He lives in Clermont, Florida, and has four children. </b></u><br />
This is how Kris Penny looked in April 2015:<br />
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<u>Until September 25, 2014, life was treating him well. His flooring company had just secured its first big contract. That morning, Penny was feeling lethargic and pulled into a McDonald’s for a cup of orange juice. Seconds after he dra</u><span class="text_exposed_show"><u>nk it he doubled over in pain. “It felt like someone stabbed me in the stomach with a machete,” he said. A co-worker drove him to the emergency room.<br /> When he awoke in the hospital, his wife, Lori McNamara, was beside him, crying. “I go, ‘What’s the matter? I’m still here,’ ” Penny said. </u></span></div>
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<span class="text_exposed_show"><u>The surgeon who’d opened up his abdomen had found it full of cancer — type to be determined. The doctor “pretty much told me to get my affairs in order, right there on the spot.”</u></span><br />
<span class="text_exposed_show"><u></u></span><span class="text_exposed_show"><u><br />The pathology results came in four days later. Penny learned that he had peritoneal mesothelioma — a rare cancer of the lining of the abdomen almost always tied to asbestos exposure. He concluded, after consulting with a lawyer, that he’d inhaled microscopic asbestos fibers about a decade earlier while installing fiber-optic cable underground. <br /> The cable was housed in pipe made of asbestos cement.</u></span><br />
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<span class="text_exposed_show"><u><b>Lou's comment</b>: Kris Penny got his exposure only 10 years ago after inhaling microscopic asbestos fibers while installing fiber-optic cable underground. </u></span><br />
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<span class="text_exposed_show"><u>From the time of asbestos exposure, invisible fibres can stay dormant in your body from 10 to 40 years then present as deadly asbestos related diseases such as Mesothelioma (asbestos cancer) or asbestosis (non malignant asbestos cancer). Both of these you would not wish on anyone! Painful and aggressive, asbestos literally takes your breath away as the tumours lay in the linings of your body and gradually join up to form cauliflower like tumours that crush your organs creating unbearable pain, breathing difficulties and leaving you fighting for your life! </u></span><br />
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<span class="text_exposed_show"><b>Please do not take any risks with asbestos - it simply is not worth it for yourself, family, friends and workmates!</b></span><br />
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-59195728111328542992016-01-11T01:44:00.000-08:002016-01-11T01:47:35.518-08:00Keytruda for Mesothelioma overnight no. 14 and walk in the park!<div class="separator" style="clear: both; text-align: center;">
www.change.org </div>
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Search for Keytruda Lou Williams Mesothelioma to find my petition to fast track Keytruda on our Australian PBS (Pharmaceutical Benefits Scheme) for Mesothelioma and other rare cancers.</div>
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Sarah 20 years diagnosed with Mesothelioma (asbestos cancer) fighting for her life!</h2>
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<strong>Lou (Louise) Williams, </strong>Australia</div>
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<span class="no-wrap">2 Jan 2016 Sarah who lives in</span> USA<br />
Sarah is only 20 years of age, married with a beautiful little son. Sarah was diagnosed with Mesothelioma, the deadly form of asbestos cancer in July 2015. She and her family are headed to Dallas next week for surgery to remove her left lung, followed by chemotherapy and radiation for several weeks. Doctors tell her that even with the surgery, she might only live two or three more years. <br />
Lou's comment: Sarah is a very brave warrior with such inner strength and has the love of her family, friends and the Mesothelioma community. Sarah you are not on your own, we are holding your hand all the way. You will get through this!<br />
<b><u>Update 10 Jan 2016</u></b>: Sarah has had her operation to remove a lung and a couple of ribs (Extrapleural Pneumonectomy for Mesothelioma operation). She was in ICU for a few days and has now been moved to another ward. She took her first big walk today and is making good progress. Sarah is so young, brave and a real warrior who with her husband, Logan, is being faced with this nightmare of living with mesothelioma through no fault of her own - her innocent exposure to inhaling invisible asbestos fibres probably as a little child to being diagnosed with mesothelioma cancer. Sarah you truly are a very brave person who has so many family and friends sending your so much support and wishing you a speedy recovery from your major operation.<br />
<b><u>Logan's comment</u></b>: Please keep praying for a quick recovery thank you everyone. Sarah is recovering well, very sore from the operation and just wants to be home with their little son.</div>
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Sarah recovering 2 days after major surgery to remove a lung and 2 ribs for Mesothelioma Cancer.<br />
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Hugs in Unity around the world to Sarah and everyone else doing it tough atm. My heart goes out to Krissandy who lost her mum to Mesothelioma last night. She tried to access Keytruda for her mum however was unable to do so in her own country without huge expense. I tried all avenues to help her obtain it however we weren't successful. Unfortunately her beautiful mother died in absolute painful agony as medications did not work. Within 3 months her life was ended after being diagnosed in October 2015 with mesothelioma cancer. Mesothelioma (asbestos) cancer can be very brutal, aggressive and painful.</div>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike> I had No. 14 Keytruda infusion overnight last week. Blood tests done upon admission in pathology and my haemoglobin was up to 121! This is amazing compared to a year ago when it was nudging on 70 and I needed 4 blood transfusions to stay alive at the time! My haemoglobin has to be 100 for the Keytruda infusion to be administered (similar to chemotherapy) into a vein in my arm.<br />
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Admitted to the makeshift oncology ward with shared rooms while the 4th floor oncology ward was getting a makeover, I found myself in a room with a lovely lady who was aged about 40 with 4 children and a husband. She had recently been diagnosed with bowel cancer - I was able to give her strength, hope and let her know that she is in good hands with her oncologist who is my oncologist and he has kept me alive with quality of life since 2003! (Yes for those of you who are new to my blog, I was diagnosed with peritoneal mesothelioma in 2003 and then in 2009 diagnosed with pleural mesothelioma).<br />
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After the infusion was done I escaped for an early dinner with Keith, then I had the lounge to myself in the ward until 10pm with an amazing view of the city of Melbourne in the background and fireworks at the Etihad stadium lighting up the sky at 9pm! So how lucky was I to be able to sit back, read the paper, listen to light background music, have a cuppa and enjoy this view! <br />
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Blood pressure taken at midnight and again at 5.30am on Thursday morning. Showered and ready for my oncologist to do his rounds at 7.15am then discharged by 8am! A lovely stroll through the Fitzroy and Treasury Gardens stopping at the beautiful Old Post Office to have a light breakfast before walking to the train station and getting the coach home as trains were not being used on that line at the time.<br />
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Discharged from hospital at 8am, walked through the beautiful Fitzroy/Treasury gardens into Melbourne city. Enjoying a croissant and green tea under the arches of old post office. Reminding me of beautiful Nice, France!<br />
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Saturday and Sunday were my days of having nana naps thanks to Keytruda infusion. My body tells me when to have a rest in between carrying on in life with quality and enjoying every day of being able to do just about everything that a normal person can do with NO PAIN management! I am free of pain and dread taking the basic Panadol and Emend (anti nausea) medication prior to when Keytruda is given as I haven't taken any medication for months now!<br />
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My email address is: eradicateasbestos@gmail.com<br />
Twitter: mesothelioma53<br />
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Please feel to contact me anytime.<br />
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-82251602635843651342016-01-02T03:55:00.003-08:002016-01-02T03:55:53.832-08:00Sarah 20 yrs old diagnosed with deadly Mesothelioma (asbestos cancer) fighting for her life!Hi <br />
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Welcome to 2016 and may it bring happiness, good luck and the best of health for all!<br />
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A toast to everyone for 2016 from <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=602012895" href="https://www.facebook.com/lou.williams.714">Lou Williams</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=1776838268" href="https://www.facebook.com/profile.php?id=1776838268">Keith Williams</a> and our beautiful siamese cat Charlie. Being here to see the new year in is a miracle and one we never ever thought would happen! Thanks to Keytruda (immunotherapy drug), my oncologist Dr Allan Zimet, the love of family and all friends - my heart is full and my glass too! HAPPY NEW YEAR!!<br />
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Please copy this link below and sign the petition and share. </div>
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https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug/u/14802834</div>
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www.change.org </div>
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Search Keytruda on PBS</div>
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<br />Keytruda on PBS (Pharmaceutical Benefits Scheme) for Mesothelioma and other rare less common cancers (RLC). Keytruda life saving drug!<br />
I am campaigning to have this drug fast tracked on the PBS for others with Mesothelioma (Asbestos cancer) as it has shown great promise in treating this cancer and other rare less common cancers (RLC) and need your help to do so. I believe those living with Mesothelioma and ot<span class="text_exposed_hide">...</span><span class="text_exposed_show">her RLC should have the option of this drug Keytruda (in discussion with their oncologist) and not have the worry of finding the expensive funds to have the infusion every three weeks. It has shown to kickstart the immune system and in turn fight the cancer cells. It has done this with me - I have peritoneal and pleural mesothelioma and was literally on death's door! Daily I am contacted by others with Mesothelioma wanting to have Keytruda and because of the expense cannot do so. Mesothelioma cancer is brutal, aggressive and very painful, we simply do not have the time to put our life on hold until the Keytruda issue is 'debated'. Please sign and share. Thank you.</span></div>
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Sarah 20 years diagnosed with Mesothelioma (asbestos cancer) fighting for her life!</h2>
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<strong>Lou (Louise) Williams</strong><div class="type-weak type-ellipsis">
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<span class="no-wrap">2 Jan 2016 — </span>1 Jan 2016 - USA<br />Sarah is only 20 years of age, married with a beautiful little son. Sarah was diagnosed with Mesothelioma, the deadly form of asbestos cancer in July 2015. She and her family are headed to Dallas next week for surgery to remove her left lung, followed by chemotherapy and radiation for several weeks. Doctors tell her that even with the surgery, she might only live two or three more years. <br />Lou's comment: Sarah is a very brave warrior with such inner strength and has the love of her family, friends and the Mesothelioma community. Sarah you are not on your own, we are holding your hand all the way. You will get through this!</div>
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<div class="hide-overflow" data-height="45" data-render="true" data-text="Amarillo, TX - While most young folks are prepping for new year's eve festivities, one local young woman is prepping for a life changing surgery. Sarah Miller says she will remain positive in 2016 despite doctors saying she running out of time. Her new year's resolution -- to beat cancer." data-view="components/ellipsis" style="max-height: none; word-wrap: break-word;">
<span class="dotdotdot ">Amarillo, TX - While most young folks are prepping for new year's eve festivities, one local young woman is prepping for a life changing surgery. Sarah Miller says she will remain positive in 2016 despite... </span></div>
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http://www.newschannel10.com</div>
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-69872941514838147572015-12-28T21:59:00.003-08:002015-12-28T21:59:53.356-08:00Spending time with family and friends for Xmas/New Year celebrations while feeling wonderful on Keytruda/Mesothelioma!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOgSlWoy6Ahl2F28h9j2SUI9lFUDmZ1jMHHI_Yq1PxAOdXWzzeHSeAO1oJknn3rS4_HA86jc6KwsePmfpT8EK7rVnTrT4ZDj1yDacTX7455GushDhPokQb9ZjQwuGHuSVUQYHDDVAseJ1V/s1600/Lou+%2526+Ruby.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOgSlWoy6Ahl2F28h9j2SUI9lFUDmZ1jMHHI_Yq1PxAOdXWzzeHSeAO1oJknn3rS4_HA86jc6KwsePmfpT8EK7rVnTrT4ZDj1yDacTX7455GushDhPokQb9ZjQwuGHuSVUQYHDDVAseJ1V/s320/Lou+%2526+Ruby.jpg" width="320" /></a></div>
I am enjoying catching up with family and friends over this Christmas/New Year break. The above photo was taken recently in the beautiful gardens of Melbourne, Victoria with my little grand-daughter Ruby. Jo, Ruby and myself had a girls' catch up in central Melbourne just prior to Christmas with a visit to the NVG (National Victorian Gallery) and saw Andy Warhol part exhibition plus a visit to the children's Andy Warhol cat section - highly recommended for the kids to computer interact with his cats!<br />
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Brisbane Christmas catch up with my beautiful friends of over 35 years when our children were little.<br />
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So many other catch ups for Christmas/New Year. We have hosted some here and had friends/family staying with us - last one to airport tomorrow bound for home! Extreme hot weather here last few weeks and from tomorrow until Saturday will again see temperatures reach 40 degrees celcius. We have had huge out of control bush fires down the Great Ocean Road area and luckily no loss of life although unfortunately 120 homes burnt down. Our area here is very dry and we are on fire alert. We have only tank water and already this summer have had to buy in water.<br />
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<img alt="Dec 28 in loving memory copy" src="http://www.asbestosdiseaseawareness.org/wp-content/uploads/2013/12/Dec-28-in-loving-memory-copy-450x287.jpg" /><br />
<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.32px;">Can you believe over 107,000 candles would have to be lit for all who have died in 2015 from asbestos related cancers. Thank you to ADAO (Asbestos Disease Awareness Organisation) for this tradition every year on 28 December candles burn around the world to remember those who have lost their lives to mesothelioma cancer. </span><span style="background-color: white; color: #545454; font-family: 'PT Sans', Arial, Helvetica, sans-serif; font-size: 16px; line-height: 24px;">The candle lighting tradition holds special remembrance for mesothelioma warrior, </span><a href="http://www.asbestosdiseaseawareness.org/archives/27713" style="background-color: white; box-sizing: border-box; color: #1a80b6; font-family: 'PT Sans', Arial, Helvetica, sans-serif; font-size: 16px; line-height: 24px; text-decoration: none;"><strong style="box-sizing: border-box;">Jill Vaughn</strong></a><span style="background-color: white; color: #545454; font-family: 'PT Sans', Arial, Helvetica, sans-serif; font-size: 16px; line-height: 24px;">, whose candle lighting tradition brought us hope and light, year after year. Jill tragically </span><a href="http://www.asbestosdiseaseawareness.org/archives/21560" style="background-color: white; box-sizing: border-box; color: #1a80b6; font-family: 'PT Sans', Arial, Helvetica, sans-serif; font-size: 16px; line-height: 24px; text-decoration: none;"><strong style="box-sizing: border-box;">lost her courageous battle</strong></a><span style="background-color: white; color: #545454; font-family: 'PT Sans', Arial, Helvetica, sans-serif; font-size: 16px; line-height: 24px;"> with mesothelioma last year. She was a rock of strength and beacon of hope for patients and families around the world. We are honored to keep Jill’s memory and love for community alive through this tradition of remembrance.</span><br />
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<b>Lighting a candle to remember my beautiful dad Norman Heritage who died of Mesothelioma in 1985 aged 54 yrs. Also my candle burns brightly to remember all of those beautiful and brave warriors who have lost their life to deadly asbestos greed. Forever loved always xx</b></div>
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<a ajaxify="https://www.facebook.com/photo.php?fbid=10153322858157896&set=a.10151997285567896.1073741828.602012895&type=3&src=https%3A%2F%2Fscontent.xx.fbcdn.net%2Fhphotos-xfa1%2Ft31.0-8%2F883375_10153322858157896_1705168142282118043_o.jpg&smallsrc=https%3A%2F%2Fscontent.xx.fbcdn.net%2Fhphotos-xft1%2Fv%2Ft1.0-9%2F1935976_10153322858157896_1705168142282118043_n.jpg%3Foh%3D51ab28279f4f678527004bb90f97edb5%26oe%3D571F35B7&size=1536%2C2048&player_origin=profile" class="_4-eo" href="https://www.facebook.com/photo.php?fbid=10153322858157896&set=a.10151997285567896.1073741828.602012895&type=3" rel="theater" style="box-shadow: rgba(0, 0, 0, 0.0470588) 0px 1px 1px; cursor: pointer; display: block; position: relative; width: 295px;"><div style="box-sizing: border-box; color: #545454; font-family: 'PT Sans', Arial, Helvetica, sans-serif; font-size: 16px; line-height: 24px; margin-bottom: 20px;">
In honor of the longstanding tradition, the Mesothelioma Warrior community will light candles on December 28th in loving memory of those who have lost their mesothelioma battle and again in support of Warriors battling mesothelioma on January 4, 2016.</div>
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<a ajaxify="https://www.facebook.com/photo.php?fbid=10153322858157896&set=a.10151997285567896.1073741828.602012895&type=3&src=https%3A%2F%2Fscontent.xx.fbcdn.net%2Fhphotos-xfa1%2Ft31.0-8%2F883375_10153322858157896_1705168142282118043_o.jpg&smallsrc=https%3A%2F%2Fscontent.xx.fbcdn.net%2Fhphotos-xft1%2Fv%2Ft1.0-9%2F1935976_10153322858157896_1705168142282118043_n.jpg%3Foh%3D51ab28279f4f678527004bb90f97edb5%26oe%3D571F35B7&size=1536%2C2048&player_origin=profile" class="_4-eo" href="https://www.facebook.com/photo.php?fbid=10153322858157896&set=a.10151997285567896.1073741828.602012895&type=3" rel="theater" style="box-shadow: rgba(0, 0, 0, 0.0470588) 0px 1px 1px; cursor: pointer; display: block; position: relative; width: 295px;">The candle lighting tradition holds special remembrance for mesothelioma warrior, </a><a href="http://www.asbestosdiseaseawareness.org/archives/27713" style="box-sizing: border-box; color: #1a80b6; text-decoration: none;"><strong style="box-sizing: border-box;">Jill Vaughn</strong></a>, whose candle lighting tradition brought us hope and light, year after year. Jill tragically <a href="http://www.asbestosdiseaseawareness.org/archives/21560" style="box-sizing: border-box; color: #1a80b6; text-decoration: none;"><strong style="box-sizing: border-box;">lost her courageous battle</strong></a> with mesothelioma last year. She was a rock of strength and beacon of hope for patients and families around the world. We are honored to keep Jill’s memory and love for community alive through this tradition of remembrance.</div>
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“When I started the candle lighting in 2000, I never dreamed it would go on this long. Thanks to ADAO, I can dream that it will go on forever! Linda and Julie have really made it something special and the site is so amazing. I could never have kept up with all the names. Many blessings for your future work.” — Jill Vaughn.</div>
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Any Mesothelioma Warrior Candle Lighting names submitted after December 15th will be added to the list on or before March 31, 2016. <a href="http://bit.ly/1k1eI84" style="box-sizing: border-box; color: #1a80b6; text-decoration: none;" target="_blank">Click here to submit a name for the 2015-2016 Mesothelioma Warrior Candle Lighting List </a></div>
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May the flames of hope, courage, and community continue to burn brightly in our hearts forever.</div>
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In unity and hope,</div>
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<em style="box-sizing: border-box;">The ADAO Mesothelioma Warrior Candle Lighting team.</em></div>
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<span style="box-sizing: border-box; line-height: 24px;"><span style="color: #545454; font-family: PT Sans, Arial, Helvetica, sans-serif;"><i>http://www.asbestosdiseaseawareness.org/archives/36364</i></span></span></div>
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-14891052787930450482015-12-17T13:52:00.001-08:002015-12-17T13:52:45.883-08:00Busy Christmas festivities and Keytruda No. 13 overnight in hospitalHi<br />
On a whim we flew to Tasmania for a few days recently and visited our favourite places Greens Beach and Launceston. Caught up with friends for Christmas get-togethers including a mini Christmas dinner party with a santa theme - yes Santa did visit and read out a Christmas quiz followed by presents for naughty & nice friends!<br />
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Main meal!</div>
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We visited beautiful Cataract Gorge in Launceston - a nice walk of 1.5 kms along the gorge, a outdoor cafe visit while enjoying the beautiful view of the gorge, rotunda and hydrangeas in flower plus plenty of peacocks including a mother with her little chicks.<br />
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Moment in time! Mother peacock and her babies</div>
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Cataract Gorge rotunda and cafe</div>
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Entrance to Cataract Gorge</div>
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Beautiful Cataract Gorge, Launceston, Tasmania and peacocks.</div>
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I then walked for over 3 hours around town and through the beautiful City Park, stopping a few times to just rest and enjoy my surroundings. That night we flew home and arrived about 11pm.<br />
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Next day (Wednesday) I caught the trains into Melbourne city and was admitted to hospital overnight for no. 13 Keytruda. Blood tests at pathology first, then check in to the ward. As my room wasn't ready I went for a walk and tram ride to visit my daughter and little grandkids for a few hours returning at 4pm for my infusion of Keytruda. An old friend visited and we went out to dinner returning to the hospital room at 9pm! As I am feeling so well atm I hate being in the hospital ward for any longer than I have to do so, also it is impossible to get much sleep during the night so when my oncologist did his rounds at 6.50am I was discharged at 7.30am and walked through the beautiful Fitzroy Gardens enjoying the birds chirping and our beautiful warm weather that was perfect for walking into the city. I walked around the city until 11am when I met my SIL at the Westin Hotel for a Christmas high tea and long chat!<br />
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Home on the train and I finally was exhausted about 10pm and went to bed for a few hours rest! Woken up by Charlie (our siamese cat) at 6am for his breakfast and telling me it is time to get up and glad that I did - a beautiful warm and sunny morning ... mind you the next few days are forecast to be at least 40 degrees celcius! High fire danger and windy conditions.<br />
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I am doing lots of walking and enjoying being able to do this without exhaustion. Catching up with family and friends for Christmas festivities I absolutely love and am enjoying! I don't want Christmas to end!!<br />
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To all enjoy your Christmas/New year festivities and party like there is no tomorrow! It is the now we all have and living in the moment. <br />
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To all the warriors who are not doing so well - my heart goes out to you and know that I am holding your hand. <br />
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My petition is still ongoing until I have the meeting with our health minister Hon Sussan Ley.<br />
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www.change.org and search for Keytruda PBS Lou Williams<br />
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My email address is: eradicateasbestos@gmail.comAnonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-87438122508741501482015-12-11T04:37:00.001-08:002015-12-11T04:37:40.715-08:00Lou's Petition update Keytruda on PBS for Mesothelioma<h4 class="type-weak" style="background-color: white; box-sizing: border-box; color: #737273; font-family: 'Helvetica Neue', Helvetica, Arial, Tahoma, sans-serif; font-size: 1.125rem; line-height: 1.33334; margin: 1.25em 0px 0.625em;">
I currently have a petition to fast track Keytruda on to the PBS (Pharmaceutical Benefits Scheme in Australia) for Mesothelioma cancer and 29 other RLC (rare and lesser known cancers).</h4>
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To take a look at my petition and sign/comment/share</div>
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www.change.org</div>
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Search 'Keytruda PBS Mesothelioma' and my petition will appear.</div>
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Below is my update tonight on the petition. I regularly update the petition to keep my supporters in the loop of what is happening. My aim is to have a meeting with our Health Minister, Honourable Sussan Ley.</div>
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Petition update</h4>
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Lou's blog, my progress on Keytruda and Infusion No. 13 scheduled Weds 16 Dec 2015</h2>
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<strong class="" style="box-sizing: border-box;">Lou (Louise) Williams</strong><div class="type-weak type-ellipsis" style="box-sizing: border-box; color: #737273; overflow: hidden; text-overflow: ellipsis;">
Australia</div>
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<span class="no-wrap" style="box-sizing: border-box; white-space: nowrap;">11 Dec 2015 — </span>Hi, my blog Living with Mesothelioma in Australia link is below, if you would like to follow please click on the link and insert your email address on right side of page. You will then receive regular blog updates.<br style="box-sizing: border-box;" />If you would like to contact me, my email address is<br style="box-sizing: border-box;" /><a href="mailto:eradicateasbestos@gmail.com" style="background-color: transparent; box-sizing: border-box; color: #ec2c22; cursor: pointer;">eradicateasbestos@gmail.com</a><br style="box-sizing: border-box;" />I am booked into hospital next Wednesday 16 December for my 13th infusion of Keytruda. (Keytruda is intravenously given into the arm with similar procedure as to how chemotherapy is infused). I have Keytruda every 3 weeks.<br style="box-sizing: border-box;" />I am feeling so well, in fact the best that I have felt for a couple of years! <br style="box-sizing: border-box;" />Tuesday - on the train to Melbourne for an asbestos related meeting, met up with 2 mesowarriors and then enjoyed time with my daughter and beautiful grandkids. The next day, I used the wheelbarrow to shovel mulch onto our garden for 2 hours! Afterwards no exhaustion or tight chest! Later that day I carried 10 buckets of recycled water from our washing machine on to the garden as it is so dry and in drought stage so early in our Summer season. Again no exhaustion or tight chest!<br style="box-sizing: border-box;" />Yesterday on a plane to Tasmania for a few days to recharge my immune system, catch up with friends and walk along the quiet beach! Tomorrow night we are hosting a mini Christmas dinner party with friends, this time last year there was no way that I could do any of this! <br style="box-sizing: border-box;" />Thank you Keytruda and to my oncologist, Dr Allan Zimet - you both have given me back my life with QUALITY OF LIFE!</div>
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Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-19301411745058132622015-12-08T02:16:00.000-08:002015-12-08T02:16:01.592-08:00Why do I campaign hard with advocacy, awareness and education on asbestos issues?Why do I campaign hard with advocacy, awareness and education on asbestos issues plus give support to those living with an ARD (asbestos related disease including mesothelioma) and to their families including those who left to pick up the pieces when their loved one dies from an ARD?<br />
<br />
<b><u>The simple answer is because I care</u></b>. I am not angry because it would stew inside me and myself, in turn, would shrivel up and die of anger at asbestos greed. I care -<b> no one should ever have to go through the brutal pain and suffering as a victim, and no one should ever have to watch someone they love go through this either. </b> <b><u><i>It is a preventable disease/cancer caused by asbestos greed - not by us!</i></u></b><br />
<b><u><i><br /></i></u></b>
My darling dad died of pleural mesothelioma (working in the building industry) in 1985 aged 54 years. He lasted just a few months and in that time he was in so much pain, agony and on 24/7 oxygen - all because he went to work and did his job well! Since then I have been aware of the deadly dangers of asbestos fibres and had spoken out to warn others working with asbestos products of the dangers. Then when I was finally diagnosed in 2003 with peritoneal mesothelioma and later in 2009 with pleural mesothelioma the crusader in me came to the forefront! <b><u>How dare asbestos greed continues to take innocent lives and wreck beautiful families! </u></b><br />
<b><u><br /></u></b>
<b><u>Crusader fights for cancer drug - Star Weekly Newspaper 7 Dec 2015</u></b><br />
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A Gisborne woman who has spent 12 years battling mesothelioma is urging the federal government to add a revolutionary, but costly, medication to the pharmaceutical benefits scheme.</div>
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Despite her ill health, Louise Williams has spent many years fighting on behalf of others diagnosed with lung cancer caused by exposure to asbestos.</div>
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Mrs Williams said that before starting a new medication, Keytruda, in April this year, she couldn’t get out of bed.</div>
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‘‘I was dying,’’ she said. ‘‘I needed oxygen 24/7, I had severe back pain, bone pain, nausea … my body was shutting down.’’</div>
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In 1985, her father, who worked in the building industry, was diagnosed with pleural mesothelioma. He died six months later aged 54.</div>
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In 2003, Mrs Williams, then 47, was diagnosed with peritoneal mesothelioma. In 2009, it became pleural mesothelioma. She has had large tumours removed, and she underwent many courses of chemotherapy before starting on Keytruda.</div>
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Mrs Williams said her life had been transformed after 12 doses of the drug, which encourages the body’s immune system to fight tumours.</div>
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‘‘It doesn’t kick in immediately, but after the third dose my scan showed significantly reduced tumours and fluid,’’ she said.</div>
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‘‘After numbers four and five, I started to ease up the oxygen and was walking better and doing basic household things.</div>
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‘‘Between five and six I thought, well, what’s wrong with me?</div>
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‘‘My quality of life is back. I’m able to do everything I used to be able to do.’’</div>
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But Keytruda, which is listed on the PBS for melanoma but not for asbestos cancers, doesn’t come cheap.</div>
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Depending on body weight, a single dose can cost between $6000 and $11,000, and it must be administered every three weeks.</div>
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‘‘At the moment it’s usually prescribed at the end of life because it’s so expensive,’’ Mrs Williams said. ‘‘I believe once it’s on the PBS, oncologists will be able to try it earlier.’’</div>
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Keytruda is getting results with more than 20 different cancer varieties around the world.</div>
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‘‘With mesothelioma it’s showing a success rate of 60 to 70 per cent,’’ Mrs Williams said. “Chemotherapy is about 20 per cent. Everyone should have this option.’’</div>
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The efforts of Mrs Williams, who has spoken at several international conferences, were recently praised in Federal Parliament by McEwen MP Rob Mitchell.</div>
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‘‘I do not think I have met a person with such great inner strength and courage,’’ he said.</div>
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‘‘We will keep fighting to help her and hopefully other victims get the support and medication they need to help them lead full lives.’’</div>
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Mrs Williams, who hopes to present a 6000-signature petition to Health Minister Sussan Ley soon, said she believed victory was near.</div>
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‘‘We will get it done,’’ she said. ‘‘I know we will.’’</div>
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A spokesman for Ms Ley did not respond before deadline.</div>
<span style="font-family: sans-serif; font-size: 12px; line-height: 15.6px;">- See more at: http://www.starweekly.com.au/news/crusader-fights-for-cancer-drug-2/#sthash.kTAEQVy9.dpuf</span><br />
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My campaign at the present moment is to get Keytruda fast tracked on to our PBS (Pharmaceutical Benefits Scheme) for each infusion will be free rather than the expensive costs at the moment. With Mesothelioma we do not have time to wait for the length of usual time it takes for a drug to be submitted and approved. With Keytruda already on the PBS for Melanoma the benefits are being shown already in many cases of Melanoma (the recent case being Jimmy Carter former President of USA.)<br />
http://www.nbcnews.com/health/cancer/heres-look-keytruda-drug-jimmy-carter-says-made-his-tumors-n475561<br />
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Jimmy Carter credits the new cancer drug Keytruda for <a href="http://www.nbcnews.com/news/us-news/president-jimmy-carter-says-cancer-brain-gone-n475056" style="background: 0px 0px; box-sizing: inherit; color: #4372b8; text-decoration: none;">shrinking his brain tumors completely.</a> It's one more possible victory for the newest class of cancer drugs that empower the immune system to fight off tumors. <span style="letter-spacing: 0.01rem;">But cancer experts note that it's not at all clear that the drug itself is what shrank Carter's tumors. The former president was also treated with radiation to his brain and had a large tumor on his liver removed.</span></div>
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While most immune therapy drugs boost the immune system so that it can battle the cancer, Keytruda was the first drug to take a different approach that disrupts a trick tumors use to hide from immune cells. <span style="letter-spacing: 0.01rem;">The Food and Drug Administration gave Keytruda accelerated approval in 2014 for patients, like Carter, whose melanoma has spread. It was on the basis of a big study that showed Keytruda could shrink the tumors of about a third of patients by as much as 90 percent.</span></div>
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<span style="background-color: white; letter-spacing: 0.01rem; line-height: 24px;">Dr. Antoni Ribas of the University of California Los Angeles led that trial. Ribas says between 70 and 80 percent of the patients whose tumors shrank on Keytruda are still continuing to see their tumors shrink.</span></div>
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"That's what we expect from the immune system," he said.</div>
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Kathy Thomas of Torrance, California, was one of them. Thomas went from being in a wheelchair to walking three miles a day. She'd tried other immune therapies such as interleukin and a drug called Yervoy, but the side-effects made her sick.</div>
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And her cancer kept coming back. She started Keytruda in 2012 and felt the effects after two rounds of treatment.</div>
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"My hair is back and I am fat and happy," she said. Thomas celebrated her 60th birthday this year by traveling to South America and the Caribbean. She's not cured, but says tumors on her liver shrink after every new round of treatment with Keytruda.</div>
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"There needs to be a category of cancer patients like me. I am not cancer-free but I am surviving with it and basically doing well,"she said.</div>
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<span style="color: #81929a; font-family: 'Open Sans Regular', 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 12px; letter-spacing: normal; line-height: 19.6px;">Lou Williams, a mesothelioma sufferer, is campaigning to get the lifesaving drug, Keytruda, on to the Pharmaceutical Benefits Scheme. Picture: Kylie Else </span><span style="color: #81929a; font-family: 'Open Sans Regular', 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 12px;">Sunbury/Macedon Leader Newspaper 5 December 2015</span></div>
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LOU Williams has been fighting to stay alive for the past 13 years, with her body finally “shutting down” in April this year.</div>
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“I was on oxygen 24/7 and high doses of morphine for chronic bone pain,” the New Gisborne woman, 60, said.</div>
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“I was having blood transfusions to stay alive, although I was really receiving palliative care.”</div>
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Then Mrs Williams heard about Keytruda — an extremely expensive drug that had shown some promise treating mesothelioma (asbestos cancer).</div>
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“I didn’t want to die,” Mrs Williams said.</div>
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“So my husband and I decided we’d give it our best shot and paid for the treatment on our credit card.”</div>
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Doses of Keytruda cost between $6000 and $11,000, with several rounds of treatment needed before its effects can be assessed.</div>
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“At first, I was still shutting down and continuing to lose weight,” Mrs Williams said.</div>
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“Then after eight weeks and the third round of treatment, scans showed significant shrinking of my tumours.</div>
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“By number five I didn’t need oxygen anymore and by round six I was walking around by myself again.”</div>
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Mrs Williams continues to receive doses of the drug every three weeks and is determined to make Keytruda accessible to others suffering asbestos poisoning.</div>
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She was exposed to asbestos as a child in the ’70s playing with fibro sheeting offcuts. Her father died from pleural mesothelioma in 1985.</div>
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Mrs Williams’ <a href="https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug" style="background-color: transparent; box-sizing: inherit; color: #0059bf; text-decoration: none;" target="_blank">change.org petition</a>, which has so far attracted more than 5900 signatures, is calling for Federal Health Minister Sussan Ley to have the drug fast tracked on to the Pharmaceutical Benefits Scheme (PBS), bringing the cost down to around $36 per dose.</div>
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Keytruda was approved for use in Australia for the treatment of advanced melanoma in adults in April 2015.</div>
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Mrs Williams’ campaign has attracted international attention, drawing support from mesothelioma sufferers around the world, and has been backed by McEwen federal Labor MP Rob Mitchell, who spoke on the issue in Parliament last month.</div>
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“(Keytruda) is well out of the price range of most people,” Mr Mitchell said.</div>
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“That is why we have been working with Lou to encourage the pharmaceutical company that makes Keytruda to apply to the Therapeutic Goods Administration (TGA) and the PBAC to have the medication listed. There is no time to waste.”</div>
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A spokeswoman for Keytruda’s manufacturer, <a href="http://www.msd-australia.com.au/pages/home.aspx" style="background-color: transparent; box-sizing: inherit; color: #0059bf; text-decoration: none;" target="_blank">Merck Sharp & Dohme (Australia) Pty Ltd</a>, said rare cancers were difficult to research due to fewer people enrolling in clinical trials and this could delay applications for registration and reimbursement.</div>
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“The recent Review of Medicines and Medical Devices includes recommendations that could accelerate the regulatory approval of medicines, including medicines to treat rare cancers,” she said.</div>
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“MSD is fully supportive of any policy changes that would improve access to treatments for rare cancers.”</div>
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A Federal Department of Health spokesman said it would be improper for the Minister to comment on the merits of an application that first needs to go through an independent scientific assessment process.</div>
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He said the TGA and the PBAC would accept a submission to extend the TGA registration and the PBS listing of Keytruda at any time, but sponsors cannot be compelled to apply for expansions of the scope of existing TGA registration and PBS listings.</div>
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Lou's comments: I am just one of many global warriors who in unity help to make a difference.<br />
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PGARD (Parliamentary Government Asbestos Related Diseases Board members Senator Lisa Singh and Senator Russell Broadbent had a meeting with our Health Minister, Hon Sussan Ley recently to talk about Keytruda, my campaign and fast tracking it onto the PBS. A successful meeting and the next step is for me to meet with the Health Minister to present the petition with over 6,000 signatures. This petition is not about generating numbers of signatures/supporters it is about the 6,000 genuine people who passionately want to see Keytruda put on the PBS for Mesothelioma and eventually the 29 other rare cancers it is showing promise with.<br />
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Enough of talk - we need action as no one with Mesothelioma can afford to wait!Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-2463165933051349312015-12-06T14:06:00.000-08:002015-12-06T14:06:10.413-08:00ASEA International Asbestos Management Conference, Mesowarriors high-tea Brisbane Nov 2015Hi all<br />
We have been so busy the last few weeks - mind you, I love being busy and enjoying life to the max!<br />
<br />
Our week in Brisbane/Gold Coast was excellent. Keith finished his 35 days of radiation 2 days prior to when we flew to Gold Coast for a night, and I had same day my CT scans and was waiting on results - nothing to report, so I will await my next scans in January or February 2016.<br />
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Our dear friends picked us up from Gold Coast airport and we stayed with them for the night, had lots of laughs and a beautiful home cooked meal. Next morning we me family for breakfast at a little cafe in Paradise Point - was great to see everyone and all enjoyed a hearty brekkie!<br />
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On the train to Brisbane (1 hour away) and checked our bags into our hotel. While on the train who should we bump into - yes, Gail Cook and Linda Thomas (2 mesowarriors) who were on their way to join us for high tea! We all surprised Linda Reinstein in the foyer of the hotel and walked to the beautiful Room with Roses cafe, in beautiful old Brisbane Arcade to catch up with 10 other warriors/partners and little ones. We all had a wonderful catchup, lots of laughter, tears and smiles - priceless! A very special start to the ASEA (Asbestos Safety Eradication Agency) International Asbestos Management Conference! Beautiful friendships made/cherished and support from this meeting.<br />
<br />
Below is a recent interview with ADAO (Asbestos Disease Awareness Organisation) and pictures of our high tea.<br />
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<h1>
ADAO Interview with the Global Ban Asbestos Network Australian Director, Lou Williams, about the ASEA Conference</h1>
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<em>Posted on November 21, 2015</em><br />
<em>Mesothelioma Warrior Lou Williams has dedicated her life
to raising asbestos awareness, building unity, and sharing her story
to advocate for change. ADAO and Lou have worked closely together for
many years and we were honored to recognize Lou with the <a href="http://www.asbestosdiseaseawareness.org/archives/22455" target="_blank">2014 Alan R</a><a href="http://www.asbestosdiseaseawareness.org/archives/22455" target="_blank">einstein Award</a>. <span class="accordion-title">On Tuesday, Lou will join </span>Dr. Allan Zimet<span class="speaker-title"> and </span>Tanya Segelov in the <em><a href="https://www.asbestossafety.gov.au/asbestosconference2015" target="_blank">2nd Annual Asbestos Safety and Eradication Agency (ASEA) International Asbestos Management Conference</a> </em><a href="https://www.asbestossafety.gov.au/programme#accordion-body-10">Australian trials and treatments</a> session where they will present an update on key treatments and studies in Australia. </em><br />
<em>Below is the ADAO exclusive interview with Lou on her story, her
message on the claimed “miracle” drug Keytruda, and her advocacy efforts
moving forward. Lou has also started a petition to have Keytruda
approved for the Pharmaceutical Benefits Scheme (PBS) for Mesothelioma. <strong> <a href="http://chn.ge/1F6Vt6p">Please support Lou’s action by signing her petition.</a> </strong></em><em>~ Linda</em><br />
<strong>Lou, when were you first exposed to asbestos? When did you first hear of “mesothelioma”?</strong><br />
<div class="wp-caption alignright" id="attachment_36072" style="width: 195px;">
<a href="http://www.asbestosdiseaseawareness.org/archives/36067/11214208_10153439957289350_1382269392657608754_n_clipped_rev_1" rel="attachment wp-att-36072"><img alt="11214208_10153439957289350_1382269392657608754_n_clipped_rev_1" class="wp-image-36072 " height="291" src="http://www.asbestosdiseaseawareness.org/wp-content/uploads/2015/11/11214208_10153439957289350_1382269392657608754_n_clipped_rev_1.png" style="border: 2px solid #000000; margin: 2px;" width="185" /></a><div class="wp-caption-text">
Lou Williams</div>
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<em>When my father, who worked in the building trade, came home from
work, I often helped shake out his work clothes, which were covered in
powder or dust. We later learned this to be asbestos fibres and I would
often shake the dust off these then put in the washing machine
(asbestos fibres on his overalls) and also vacuum his work van.
Unfortunately through dad’s exposure he died of pleural mesothelioma in
1985 aged 54 years after a very painful and aggressive death. He
lasted just a few months and every breath was painful to the last one he
took aided with oxygen.</em><br />
<em>I was diagnosed later in 2003 with peritoneal mesothelioma and
then pleural mesothelioma in 2009. Having had many extensive treatments
including surgery, chemotherapy and radiation my body had become pretty
toxic to treatments over the years and my tumours/fluid continued to
grow throughout my body. Some treatments worked and I would get
shrinkage, others stability … until mesothelioma tumours again would be
on the rapid rise.</em><br />
<strong>Tell me about Keytruda? How has this drug helped you and others? What do you want your government to know and do?</strong><br />
<em>My body was shutting down this year, dramatic weight loss – 42
kgs (approximately 92 lbs.), oxygen 24/7, extreme fatigue, chronic bone
pain and end of life stage. I was offered a lifeline just after Easter
this year, 2015, by my oncologist: Keytruda, an immune therapy drug that
stimulates the immune system to fight the tumours/fluid. I have this
treatment overnight in hospital every three weeks (currently have had
no. 11).</em><br />
<em><a href="http://www.asbestosdiseaseawareness.org/archives/36067/10259033_10152065159782896_3374409223779571442_o" rel="attachment wp-att-36183"><img alt="10259033_10152065159782896_3374409223779571442_o" class="alignright wp-image-36183 " height="244" src="http://www.asbestosdiseaseawareness.org/wp-content/uploads/2015/11/10259033_10152065159782896_3374409223779571442_o-450x305.jpg" style="border: 2px solid #000000; margin: 2px;" width="361" /></a>I
now have regained quality of life and am back campaigning to get
Keytruda placed on our Australian PBS (Pharmaceutical Benefits Scheme –
free list) for all with mesothelioma so that patients have this life
saving option despite ability to pay for it. I am also supporting others
globally with this cancer by uniting in advocacy, education and
awareness with The <a href="http://www.asbestosdiseaseawareness.org/" target="_blank">Asbestos Disease Awareness Organization</a> (ADAO), The <a href="http://www.adfa.org.au/" target="_blank">Asbestos Disease Foundation of Australia</a> (ADFA) and<a href="http://www.gban.net/" target="_blank"> Global Ban Asbestos Network</a>
(GBAN). I volunteer my time to help others who have an ARD (asbestos
related disease) and those innocent victims who are yet to be diagnosed
through asbestos greed.</em><br />
<strong>As the GBAN Australian Director, what is most important to you? </strong><br />
<em>Being a voice for others who are unable to speak out due to
illness dealing with this brutal, painful and aggressive cancer. Raising
awareness, advocacy and education on the global deadly dangers of
asbestos sends a very powerful message to our Government that asbestos
greed will no longer be tolerated around the world. We are working
towards a total ban of asbestos and this will happen in unity.</em><br />
<strong>What’s your proudest accomplishment?</strong><br />
<em>My biggest accomplishment is being alive and retaining
positive quality of life so I can continue my efforts to raise asbestos
awareness.</em><br />
<strong>Why should people attend the</strong><strong> </strong><strong>2<sup>nd</sup> Annual Asbestos Safety and Eradication Agency (ASEA) Conference? What might they learn?</strong><br />
<em>Participating in the <a href="https://www.asbestossafety.gov.au/asbestosconference2015" target="_blank">2nd Annual Asbestos Safety and Eradication Agency International Asbestos Management Conference</a> to
be held 22-24 November in Brisbane, Queensland, Australia is truly a
dream come true for me, and one that I look forward to helping make a
difference by speaking about Keytruda and my campaign/petition to have
Keytruda fast tracked on our PBS for everyone with mesothelioma and
other rare less known cancers too.</em><br />
<strong>What is your “Asbestos Awareness Week” message for the world?</strong><br />
<em>Asbestos is everywhere. Asbestos kills! There is no safe
exposure!! We need in unity to keep fighting to get asbestos banned
worldwide!</em><br />
~~~~~~~~~~~~~~~~~~~~~~~~ <strong>Mesothelioma Warriors in Brisbane for the ASEA conference ~~~~~~~~~~~~~~~~~~~~~</strong><br />
<strong><a href="http://www.asbestosdiseaseawareness.org/archives/36067/sending-a-hug-to-mesothelioma-warrior-community-canva-1" rel="attachment wp-att-36188"><img alt="Sending a hug to Mesothelioma Warrior Community. CANVA (1)" class="alignright wp-image-36188" height="201" src="http://www.asbestosdiseaseawareness.org/wp-content/uploads/2015/11/Sending-a-hug-to-Mesothelioma-Warrior-Community.-CANVA-1-450x337.png" style="border: 2px solid #000000; margin: 2px;" width="268" /></a></strong><br />
Yesterday, Lou organized a lovely Mesothelioma Warriors’ high tea. As
we gathered, we freely shared tears, smiles, experiences, and
questions. During the tea, we snapped a photo message for Mesothelioma
Warriors around the world who were with us in spirit, but not physically
at the tea. Four of the Mesothelioma Warriors who attended the tea
shared their feelings about Lou below …<br />
<blockquote>
“Pat and I can’t thank Lou enough for her and Keith’s
support. She introduced Pat and I to Gail and Steve, where we all meet
for a lovely dinner on the Gold Coast. Pat was diagnosed with Meso in
2012, we were in such shock and disbelief. It was comforting to meet
others in our position. Lou has been such an inspiration and great
support for Pat and I and we will always be grateful to her. Sadly Pat
lost his life in 2014 after 2.5 years of severe pain. Soldier on Lou, I
hope those Tumours keep on shrinking xx. I hope this is what you want it
is so hard to put into words.” ~ Marilyn McCormack</blockquote>
<blockquote>
“I have only meet Lou since arriving in this beautiful
country, I have watched her go through her journey , and I find her to
be such an amazing woman, I feel privileged to be able to call her my
friend, one thing I do know is that she helps so many people , with all
her advice and knowledge of mesothelioma , and she is loved throughout
the world.” Linda Thomas<br />
<div class="wp-caption alignright" id="attachment_36182" style="width: 364px;">
<a href="http://www.asbestosdiseaseawareness.org/archives/36067/brisbane-tea" rel="attachment wp-att-36182"><img alt="Brisbane Tea" class="wp-image-36182 " height="282" src="http://www.asbestosdiseaseawareness.org/wp-content/uploads/2015/11/Brisbane-Tea-450x360.jpg" style="border: 2px solid #000000; margin: 2px;" width="354" /></a><div class="wp-caption-text">
Mesothelioma Warrior Tea, Brisbane, AU</div>
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“When Steve was first diagnosed in May 2012, we were shattered. We
felt so lost and alone and scared. I met Lou online and, through Lou, we
met Marilyn and Pat. It really helped to know others going down the
same painful road. Lou has been there every step of the way through all
Steve’s ups and downs and, when he died in November 2013, she contacted
me every day. This was such a life-line for me and meant the world to
me. Lou has become a great friend and my life just wouldn’t be the same
without her. I am so lucky to have found her and I am so proud of the
work she does to promote Asbestos awareness while dealing with her own
huge battle with Mesothelioma. She is one amazing woman.” ~ Gail Cook</blockquote>
<blockquote>
“Lou is my warrior dragonfly. Lou came into my life with
wisdom and knowledge on asbestos issues. She has introduced me to a
circle of Meso warriors as well as sharing her own transformation and
adaptability of life through her blog. Her dedication to Asbestos
awareness and continual support is inspiration to us all. Lou has given
me understanding of the deeper meaning of life and reminds me to have
lightness and joy.” ~ Suzanne Howarth.</blockquote>
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The next day, Sunday, I met up with my beautiful daughter Debbie and little grandkids for a few days and a special visit to little Evie's disco kinder afternoon. In between catching up with family I met 2 mesowarriors who lost their husbands a few years ago to mesothelioma and when in Brisbane we catch up. This time for a smaller version of high tea at the beautiful Shingle Inn cafe. Lots of hugs, smiles and tears.<br />
Then on the bus back into Brisbane city and a pitstop at Southbank to meet up with 2 mesowarriors from Sunshine Coast, Kim and Linda Stokes who are really getting involved with my Keytruda campaign - was so fantastic to meet in person and spend quality time together.<br />
<span class="text_exposed_link"><a href="https://www.facebook.com/groups/185217304896341/permalink/905072699577461/" target="_blank"> </a></span><br />
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<span class="_1nb_ fwn fcg" data-ft="{"tn":"C"}"><span class="fwb" data-ft="{"tn":";"}"><a href="https://www.facebook.com/linda.stokes.90410/posts/10208125325753429?fref=nf"> </a></span></span><br />
http://www.sunshinecoastdaily.com.au/news/asbestos-drug-cost-cruels-grandads-fate/2806207/<br />
CURRIMUNDI couple Kim and Linda Stokes are being
priced out of an asbestos cancer treatment that could extend their
precious time together.
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While some patients coping with melanoma pay $6.10 for a treatment of
immunotherapy drug Keytruda, Mr Stokes' bill is in the order of $11,300.
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The difference is the Pharmaceutical Benefits Scheme only covers
Keytruda for the treatment of unresectable or metastatic melanoma in
adults, despite growing evidence it has had positive effects for people
fighting mesothelioma.
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Ironically, Mr Stokes is a former melanoma patient, having had a cancerous mole removed from his back more than a decade ago.
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The 59-year-old and his wife had known for years that his boilermaker
apprenticeship at Alcoa of Australia aluminium plant in Geelong could
one day catch up with him.
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It was common for him to pull on asbestos gloves and welding jackets
during his late teens to shield himself from the heat of molten
aluminium.
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His contact with the deadly substance ended when he completed the apprenticeship but its remnants stayed in his body.
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Pain in his chest earlier this year was initially thought to be a
broken rib but he could not remember a heavy impact to cause it.
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Scans initially showed a shadowed area, which further tests indicated was a tumour.
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Mrs Stokes recalled her reaction when it was confirmed in April as malignant plural mesothelioma.<br />
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<figure> <img alt="Currimundi man Kim Stokes and his wife Linda Stokes are pushing for a drug that could ease Kimm's mesothelioma symptoms to be added to the Pharmaceutical Benefits Scheme. Photo Stuart Cumming/ Sunshine Coast Daily" data-largeimg="http://media.apnarm.net.au/img/media/images/2015/10/14/9-2995895-scn131015asbestosis04_t620.jpg" src="http://media.apnarm.net.au/img/media/images/2015/10/14/9-2995895-scn131015asbestosis04_t460.jpg" title="Currimundi man Kim Stokes and his wife Linda Stokes are pushing for a drug that could ease Kimm's mesothelioma symptoms to be added to the Pharmaceutical Benefits Scheme. Photo Stuart Cumming/ Sunshine Coast Daily" /> <figcaption> <span>Currimundi
man Kim Stokes and his wife Linda Stokes are pushing for a drug that
could ease Kimm's mesothelioma symptoms to be added to the
Pharmaceutical Benefits Scheme. Photo Stuart Cumming/ Sunshine Coast
Daily</span> <small class="photoDetails">Stuart Cumming</small> </figcaption> </figure> </div>
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Patients have an average life expectancy of less than a year after diagnosis.
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"I can just remember a groan coming out of my mouth because we knew that was the worst possible diagnosis," Mrs Stokes said.
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Mr and Mrs Stokes met as children while living in Toowoomba and have been married for the past 38 years.
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Their two children and six grandchildren are among those who have
rallied to give Mr Stokes a boost in the face of his grim outlook.
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He has completed the first of six scheduled rounds of chemotherapy at
Sunshine Coast Haematology and Oncology Clinic in Buderim and is due to
start round two tomorrow.
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His oncologist advised him if he were to try Keytruda treatment, it
would cost $11,500 every three weeks for an undetermined time period.
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That was a cost the Stokes' could not bear.
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Mr Stokes learned of the drug through a campaign by a Tasmanian
mesothelioma patient to have it added to the Pharmaceutical Benefits
Scheme.
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The woman, Louise Williams, has had a remarkable return to health since beginning Keytruda treatment earlier this year.
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Mr Stokes is supporting her push.
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"If it slows things up, other drugs and other things may become available."
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Member for Fisher Mal Brough said he had requested a briefing on Keytruda in relation to the scheme.
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"I do sympathise with Mr Stokes and other sufferers of mesothelioma as I
have seen first-hand the impacts on those who are diagnosed," Mr Brough
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More on the Conference in my next blog!</div>
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My email address is</div>
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eradicateasbestos@gmail.com</div>
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0tag:blogger.com,1999:blog-5133511194592631204.post-56015630870490704652015-11-17T03:13:00.001-08:002015-11-17T03:14:25.653-08:00Mesothelioma scans tomorrow and ASEA Asbestos International Conference Brisbane, QueenslandMy 2 monthly scans are happening tomorrow for chest/abdomen/pelvis at John Fawkner Hospital, Melbourne. Prior to this I will have a blood test, fast for 2 hours and drink 1.5 litres of water.<br />
I only have to wait 2 hours after the scan to see my oncologist and get results! I have a good feeling about this scan however it is always scanxiety that kicks in no matter how many scans that we have had over the years as the results are a do or die situation with mesothelioma cancer. It determines whether treatments are/ still working or have stopped. Shrinkage/stability is what we want to hear and breathe a sigh of relief when this happens! When the scans say tumours/fluid on the rise, then it is usually back to the drawing board with our medical team to see what other treatment options we have or to leave the situation for a while as quite often the current treatment is slowly working its magic and takes longer than a few weeks to show success.<br />
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I am busy organising my presentation for the ASEA (Asbestos Safety Eradication Agency) International Asbestos Management Conference happening from this weekend to 24 November in Brisbane, Queensland. I am speaking on Keytruda and with the help of my brother Matt, putting together a series of powerpoint slides. Now all that I have to do is to get my speech organised to co-ordinate with this and I will be fine lol! It all comes together on the day and that is what counts.<br />
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On Saturday 21 Nov I am hosting/organising a meso warriors get-together in Brisbane, more details after the event - it is to be a really fun and pampered afternoon as I believe warriors so deserve this!<br />
Pictures to come later! Linda Reinstein (CEO/ADAO) will be guest of honour at our get-together!<br />
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Well Keith has only one more zapping of radiation to go tomorrow! Yay!! Paperwork to be finalised and blood tests then he is out of there! So he will drop me off at my hospital for appointments then head over to his hospital for radiation across Melbourne city.<br />
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On a lighter note, I put our Christmas tree up on Sunday with decorations and lights as this year it is extra special to me - as NO WAY did I ever think I would be here! Thank you Keytruda!<br />
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To all warriors doing it tough atm my heart is with you. A young Australian family has just found me through my blog. He has just been diagnosed with pleural mesothelioma aged in his mid 30s. Now they are not on their own, as I will gradually introduce them to the warriors and support with others.<br />
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Lou xx<br />
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Email:<br />
eradicateasbestos@gmail.com<br />
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<br />Anonymoushttp://www.blogger.com/profile/12708475085049219679noreply@blogger.com0