Hi all
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.
Update on my petition to fast track Keytruda on to PBS for Mesothelioma.
(Please keep signing and sharing petition)
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug
Lou Williams back on Keytruda after break of 6 months!
SEP 10, 2016 — 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.
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.
I continued on Keytruda infusions every 3 weeks for 1 year.
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.
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.
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!
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.
I continued on Keytruda infusions every 3 weeks for 1 year.
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.
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.
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!
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Catch up with Lou Williams, Global Ban Asbestos Network (GBAN) 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 Rachel Shaneyfelt John Steele Geraldine Howard and others. Lou, I love you. *** BELIEVE *** Lou and Keith's special support page. Asbestos News Worldwide Asbestos Disease Awareness Organization (ADAO) "Turning Anger Into Action" Asbestos Victims Unite on “Voices on the Wall”
http://www.gban.net/2016/09/11/lou-williams-gban-australian-director-im-back-on-keytruda-after-break-of-6-months/
Lou Williams, GBAN Australian Director: I’m back on Keytruda after break of 6 months!
Posted on September 10, 2016
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.
Please join thousands of others and sign my petition to help make this life-saving drug available to Australia’s Mesothelioma Warriors!
Lou Williams, GBAN Australian National Director
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.
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.
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.
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.
After 6 months break since finishing Keytruda I am now back on 3 weekly infusions to shrink these little buggars! I will never never never give up!
Huge, huge thank you to my friends and fellow Mesothelioma Warriors for all the support, love, and strength you send my way:
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Now my current update 18 September 2016.
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
After a stay overnight, Keytruda infusion and 6 hours of new blood - I was able to walk out of the hospital on Friday.
Resting at home and regaining my warrior strength.
Plus helping others with mesothelioma, their families and assisting support groups etc daily.
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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.
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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.
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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.
http://www.adfa.org.au/
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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).
I will be in attendance and speaking on Keytruda and my journey living with Mesothelioma.
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