My 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.
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.
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.
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!
Pictures to come later! Linda Reinstein (CEO/ADAO) will be guest of honour at our get-together!
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.
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!
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.
Lou xx
Email:
eradicateasbestos@gmail.com
Tuesday, November 17, 2015
Monday, November 9, 2015
Presenting at International Conference on Asbestos Awareness and Management, Brisbane, Qld 22-24 Nov 2015
The
Asbestos Safety and Eradication Agency was established on 1 July 2013
to provide a national focus on asbestos issues which goes beyond
workplace safety to encompass environmental and public health concerns.
The agency aims to ensure asbestos issues receive the attention and
focus needed to drive change across all levels of government.
The final conference programme is now online with a fantastic line up of domestic and international speakers in asbestos management, health, advocacy and governance to look at what is best practice in managing the dangers of asbestos in our community and abroad. Registration is still open.
All exhibition packages have now SOLD OUT however advertising opportunities are still available and you can still join us as an event contributor at the conference. If you would like to know more, details and benefits are outlined in the prospectus. You can also get in touch with our events team to find out more.
https://www.asbestossafety.gov.au/programme
I am looking forward to presenting in the concurrent session 'Australian trials and treatments' on day 2.
Very exciting news as my oncologist Dr Allan Zimet will also be presenting on 'An update on key treatment studies in Australia to support people with an asbestos related disease.'
Tanya Segelov is a member of the Asbestos Safety and Eradication Council and will be the facilitator of this session.
I will be speaking in this session and providing an update on my treatment with Keytruda and also my very important campaign to have Keytruda fast tracked onto the PBS for those living with Mesothelioma.
This session will be held on Tuesday 24 Nov afternoon.
Keytruda update:
No. 11 infusion overnight in hospital last week. Main side effect was fatigue for a few days, this could also be the result of little sleep in the hospital due to noises, being waken up for blood pressure to be taken, patients who are unwell and having to be monitored hourly and just in general NOISE!! Now if I was very unwell this would be okay and the hospital would be the place to rest and be monitored overnight, however as I am well - it is very unsettling to the point of having anxiety feelings most of the time that I spend in the room. Having been in and out of hospitals since 2003, I'd so much rather be able to have my infusion of Keytruda as a day patient and go home to sleep in my own bed.
My petition to fast track Keytruda on the PBS for Mesothelioma and other rare less known cancers will be able to alleviate this stay in hospital and when this happens, I can happily every 3 weeks be a day patient for 2 hours then walk out of the hospital and home! It will be wonderful when this happens for all those living with Mesothelioma!!
The campaign is moving steadily along and I now have a scheduled appointment with the Health Minister, Sussan Ley's Advisor to present the petition, tell my story and also other stories that need to be told of Mesothelioma warriors who are anxiously awaiting Keytruda coming on the PBS (Pharmaceutical Benefits Scheme) - where it will cost $6.10 to $35 per infusion instead of the expensive cost that it is now for those who have the lifeline of Keytruda. After meeting with the Health Minister's Advisor, my next goal will be to meet face to face with Sussan Ley!
Keytruda is now on our Australian PBS for Melanoma - which is fantastic and such a huge financial burden lifted for those with Melanoma cancer. It came into effect 1 September 2015.
WE NOW NEED TO GET IT APPROVED FOR MESOTHELIOMA!!
Please continue to sign, comment and share my petition - we are making a difference!
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
(To sign please copy and paste the above link).
Keith's radiation update:
35 doses of radiation daily with weekends off, he now has only 8 to go! 3 years ago Keith had this robotic 4 hour surgery - Robotic prostatectomy is gaining popularity as a less traumatic and minimally invasive prostate cancer treatment. The da Vinci robotic prostatectomy enables surgeons to overcome many of the shortcomings of both open prostatectomy and laparoscopic prostatectomy.
Due to detected traces of cancer in his prostate area, he is now on this trial.
International Conference on Asbestos Awareness & Management.
22 to 24 Nov 2015, Brisbane Convention & Exhibition Centre, Brisbane, Queensland, Australia
The final conference programme is now online with a fantastic line up of domestic and international speakers in asbestos management, health, advocacy and governance to look at what is best practice in managing the dangers of asbestos in our community and abroad. Registration is still open.
All exhibition packages have now SOLD OUT however advertising opportunities are still available and you can still join us as an event contributor at the conference. If you would like to know more, details and benefits are outlined in the prospectus. You can also get in touch with our events team to find out more.
https://www.asbestossafety.gov.au/programme
I am looking forward to presenting in the concurrent session 'Australian trials and treatments' on day 2.
Very exciting news as my oncologist Dr Allan Zimet will also be presenting on 'An update on key treatment studies in Australia to support people with an asbestos related disease.'
Tanya Segelov is a member of the Asbestos Safety and Eradication Council and will be the facilitator of this session.
I will be speaking in this session and providing an update on my treatment with Keytruda and also my very important campaign to have Keytruda fast tracked onto the PBS for those living with Mesothelioma.
This session will be held on Tuesday 24 Nov afternoon.
Keytruda update:
No. 11 infusion overnight in hospital last week. Main side effect was fatigue for a few days, this could also be the result of little sleep in the hospital due to noises, being waken up for blood pressure to be taken, patients who are unwell and having to be monitored hourly and just in general NOISE!! Now if I was very unwell this would be okay and the hospital would be the place to rest and be monitored overnight, however as I am well - it is very unsettling to the point of having anxiety feelings most of the time that I spend in the room. Having been in and out of hospitals since 2003, I'd so much rather be able to have my infusion of Keytruda as a day patient and go home to sleep in my own bed.
My petition to fast track Keytruda on the PBS for Mesothelioma and other rare less known cancers will be able to alleviate this stay in hospital and when this happens, I can happily every 3 weeks be a day patient for 2 hours then walk out of the hospital and home! It will be wonderful when this happens for all those living with Mesothelioma!!
The campaign is moving steadily along and I now have a scheduled appointment with the Health Minister, Sussan Ley's Advisor to present the petition, tell my story and also other stories that need to be told of Mesothelioma warriors who are anxiously awaiting Keytruda coming on the PBS (Pharmaceutical Benefits Scheme) - where it will cost $6.10 to $35 per infusion instead of the expensive cost that it is now for those who have the lifeline of Keytruda. After meeting with the Health Minister's Advisor, my next goal will be to meet face to face with Sussan Ley!
Keytruda is now on our Australian PBS for Melanoma - which is fantastic and such a huge financial burden lifted for those with Melanoma cancer. It came into effect 1 September 2015.
WE NOW NEED TO GET IT APPROVED FOR MESOTHELIOMA!!
Please continue to sign, comment and share my petition - we are making a difference!
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
(To sign please copy and paste the above link).
Keith's radiation update:
35 doses of radiation daily with weekends off, he now has only 8 to go! 3 years ago Keith had this robotic 4 hour surgery - Robotic prostatectomy is gaining popularity as a less traumatic and minimally invasive prostate cancer treatment. The da Vinci robotic prostatectomy enables surgeons to overcome many of the shortcomings of both open prostatectomy and laparoscopic prostatectomy.
Due to detected traces of cancer in his prostate area, he is now on this trial.
Clinical Trial: PINPOINT
A clinical trial to investigate using
a new imaging test to find where prostate cancer has recurred after
surgery, and; using implanted radiofrequency emitting beacons to
precisely locate and treat recurrences in the prostate bed.
Technical name: Phase II trial harnessing PSMA-PET and Calypso® real-time tracking to precisely locate and treat recurrent prostate cancer.
Principal Investigator: Dr Patrick Bowden (Radiation Oncologist)
Basic Information:
The PINPOINT study is testing a new
way of identifying and treating prostate cancer that has recurred in the
same place where the prostate was removed from during surgery (prostate
bed). There are two parts to the study and not all patients will the
requirements to participate in both of them.
The first part of the research
involves a new way of identifying prostate cancer cells using a Positron
Emission Tomography (PET)/Computed Tomography (CT) Scan sensitive to
the biological marker, Prostate Specific Membrane Antigen (PSMA).
The second part of the research
involves a new way of treating prostate cancer using very small beacons
called Calypso® beacons, which are inserted into the prostate bed and
emit a radiofrequency (RF) signal. These allow us to locate and track
the prostate bed during radiotherapy.
The aim of this trial is to utilise
PSMA PET scans to more accurately identify men who have no metastatic
disease and only offer those men salvage radiation therapy, using the
Varian Calypso® advanced target localisation technique. This will also
allow for early identification of men who have metastatic disease, and
thus ensure that they receive the appropriate treatment rather than
salvage radiotherapy, which would be futile.
Monday, October 19, 2015
Keytruda and Mesothelioma in Australia 19/10/2015
Hi
It has taken a few days to get my facts correct with Keytruda in Australia for Mesothelioma (asbestos cancer). With good news to report the immunotherapy drug Keytruda is fast becoming a very talked about drug and is starting to show very promising results over time when used for Mesothelioma and 19 other rare cancers. It already has shown great results with Melanoma and for this reason has been listed on the PBS (Pharmaceutical Benefits Scheme) in Australia for Melanoma only since early September 2015.
There have been phase I study trials in Australia for Lung Cancer, (with Mesothelioma patients taking part in these trials) in particular at The Austin Hospital, Melbourne, Victoria with Professor Thomas John leading the way with this research.
There are several trials with immunotherapy drugs including Keytruda commenting early 2016 for Phase II and Phase III trials. Specifically trials for Mesothelioma and Keytruda will commence early 2016. More details to follow.
Keytruda and other immunotherapies will change how we treat diseases like Mesothelioma. These drugs are here and available now, but at considerable costs. There is data and the PBAC should allow a mechanism that enables access to it before the big trials are done.
Tanya Segelov from Turner Freeman Lawyers has written in the ADFA (Asbestos Diseases Foundation Australia) members Newsletter
KEYTRUDA TREATMENT FOR MESOTHELIOMA
Over the last few months there has been a development in relation to a second line treatment for mesothelioma. Keytruda is an immunotherapy drug that has had some success in treating melanoma. The drug is an immune check point inhibitor. As cancers develop they paralyse the immune system so that the body is unable to destroy the cancer. This involves a pathway known as PD-1, Keytruda inhibits PD-1 and enables the immune system to fight the cancer. As the drug works on the immune system it is not cancer specific.
Merck recently trialled the drug in relation to mesothelioma. In a study presented at the American Society of Clinical Oncology in April 2015, 25 patients with mesothelioma, all who had previously received standard chemotherapy and whose tumours had progressed, were treated with Keytruda. Out of the 25 patients, 7 patients achieved a partial response (reduction of tumour) while 12 patients had stable disease (no growth of tumour), a disease control rate of 76%.
The author of the Abstract noted "76% disease control rate in this previously treated malignant pleural mesothelioma population is unprecendented and warrants further study."
These results suggest that the data for mesothelioma is likely to be consistent with those in non-small cell lung cancer and melanoma.
Following the success of the initial clinical trial, a Phase II clinical trial is now being undertaken in the US with results expected in 2016.
Keytruda is now being offered by many oncologists as a second line treatment for mesothelioma. Prior to Keytruda, second line chemotherapy has been offered although the clinical data in relation to the success of second line chemotherapy shows that it has a less than 10% success rate. Keytruda treatment is given once every three weeks intravenously. Side effects do not seem to be significant and less than those following chemotherapy. Those who will benefit from the treatment (in melanoma about 50% of people have responded to this drug) appear to do so at an early stage, within the first 4 to 6 treatments.
There is anecdotal evidence that Keytruda is successful in treatting mesothelioma patients in Australia. ADFA member, Lou (Louise) Williams, has been having Keytruda treatments for approximately 6 months and in this time has seen her mesothelioma tumours reduced significantly. Lou's experiences are described in her blog.
Keytruda costs approximately $9,000 per treatment. At present Merck is offering to pay for 3 of the first 6 treatments (the 2nd, 4th and 6th treatments). This means that it will cost approx $30,000 for the first 6 treatments, by which stage an assessment should be able to be made as to whether the treatment is working. If the treatment is successful then it will continue on a 3 weekly basis at a cost of $9,000 for at least 2 years, totalling approx $300,000. At present Keytruda is on the PBS only in relation to melanoma.
Mesothelioma sufferers who have a current claim at common law can seek the cost of Keytruda treatment. The test as to whether a defendant is required to pay treatment expenses is whether the expenses are reasonable in the circumstances of both the plaintiff and the defendant. There are a number of cases on foot where the cost of Keytruda has been claimed. Defendants have challenged their liability to pay for the treatment and we are waiting for a decision of the Court. We are however hopeful that a Court will award the cost of Keytruda (at least the cost of the first six cycles with some allowance for the likelihood that the treatment may be successful and continue) where the treatment has been prescribed by the treating oncologist and in the context of promising early results from the Phase I clinical trial and the lack of any effective second line treatment for Mesothelioma.
Applications have also been made to the Dust Diseases Board for the payment of Keytruda. To date the Dust Diseases Board has declined to make payments on the basis that the drug is not TGA approved. The test however in relation to the treatment expenses payable by the Board under the Workers Compensation Act 1987 is whether the treatment is 'reasonably necessary'. For persons who have already settled a claim at common law and been refused the treatment cost for Keytruda by the Dust Diseases Board, there is an avenue to appeal the decision of the Dust Diseases Board. Such an appeal is brought in the District Court of New South Wales. In a no cost jurisdiction which means that if the case is not successful you will not be ordered to pay the Board's costs.
Keytruda details:
If you would like further details about any of the above, please contact me (Lou Williams) via my email eradicateasbestos@gmail.com
I will then help you with further information.
Lou's update on Keytruda No. 10:
Overnight in hospital last Wednesday I had my no. 10 infusion of Keytruda. While waiting for my bed, I walked 3 kms to the local shopping centre (caught the tram back to the hospital area!), and upon discharge the next day walked 2 kms through the lovely gardens into the city of Melbourne.
By the time I arrived home - fatigue had set in, not sure if it was lack of hospital overnight sleep or a combination of that and Keytruda! Fatigue lasted 5 days however NO PAIN! This morning some fluid in the tummy area however nothing drastic.
Nana enjoying the gardens with my lovely Melbourne grandkids Ruby, Henry and Oliver.
I have been enjoying our beautiful Spring weather and pottering in our garden. Every day new flowers appear due to the recent rains. The garden has been sadly neglected over the last couple of years due to illness, drought and lack of water so I am pleasantly surprised with my garden now!
Lilacs, daphne, violets, bearded iris, roses - not many flowers however little surprises every day!
Even Charlie has enjoyed the garden finding a shady spot to nap.
Our lavenders and gum trees blending in to the landscape.
Keith's update:
Keith has now had 14 zaps of radiation - only 21 to go! It is a 6 hour round trip to the hospital and home again (the radiation appointment takes a minimum of an hour or so). He is getting fatigued however handling it well.
Lou's petition fast track Keytruda (in Australia) on the PBS (Pharmaceutical Benefits Scheme):
We now have over 4,000 signatures and valuable comments - a huge thank you to all who have signed, commented and shared the petition. I am currently in discussion and further updates to follow. Please keep sharing - we need more signatures. In unity we are making this possible!
(This is the link below)
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
It has taken a few days to get my facts correct with Keytruda in Australia for Mesothelioma (asbestos cancer). With good news to report the immunotherapy drug Keytruda is fast becoming a very talked about drug and is starting to show very promising results over time when used for Mesothelioma and 19 other rare cancers. It already has shown great results with Melanoma and for this reason has been listed on the PBS (Pharmaceutical Benefits Scheme) in Australia for Melanoma only since early September 2015.
There have been phase I study trials in Australia for Lung Cancer, (with Mesothelioma patients taking part in these trials) in particular at The Austin Hospital, Melbourne, Victoria with Professor Thomas John leading the way with this research.
There are several trials with immunotherapy drugs including Keytruda commenting early 2016 for Phase II and Phase III trials. Specifically trials for Mesothelioma and Keytruda will commence early 2016. More details to follow.
Keytruda and other immunotherapies will change how we treat diseases like Mesothelioma. These drugs are here and available now, but at considerable costs. There is data and the PBAC should allow a mechanism that enables access to it before the big trials are done.
Tanya Segelov from Turner Freeman Lawyers has written in the ADFA (Asbestos Diseases Foundation Australia) members Newsletter
KEYTRUDA TREATMENT FOR MESOTHELIOMA
Over the last few months there has been a development in relation to a second line treatment for mesothelioma. Keytruda is an immunotherapy drug that has had some success in treating melanoma. The drug is an immune check point inhibitor. As cancers develop they paralyse the immune system so that the body is unable to destroy the cancer. This involves a pathway known as PD-1, Keytruda inhibits PD-1 and enables the immune system to fight the cancer. As the drug works on the immune system it is not cancer specific.
Merck recently trialled the drug in relation to mesothelioma. In a study presented at the American Society of Clinical Oncology in April 2015, 25 patients with mesothelioma, all who had previously received standard chemotherapy and whose tumours had progressed, were treated with Keytruda. Out of the 25 patients, 7 patients achieved a partial response (reduction of tumour) while 12 patients had stable disease (no growth of tumour), a disease control rate of 76%.
The author of the Abstract noted "76% disease control rate in this previously treated malignant pleural mesothelioma population is unprecendented and warrants further study."
These results suggest that the data for mesothelioma is likely to be consistent with those in non-small cell lung cancer and melanoma.
Following the success of the initial clinical trial, a Phase II clinical trial is now being undertaken in the US with results expected in 2016.
Keytruda is now being offered by many oncologists as a second line treatment for mesothelioma. Prior to Keytruda, second line chemotherapy has been offered although the clinical data in relation to the success of second line chemotherapy shows that it has a less than 10% success rate. Keytruda treatment is given once every three weeks intravenously. Side effects do not seem to be significant and less than those following chemotherapy. Those who will benefit from the treatment (in melanoma about 50% of people have responded to this drug) appear to do so at an early stage, within the first 4 to 6 treatments.
There is anecdotal evidence that Keytruda is successful in treatting mesothelioma patients in Australia. ADFA member, Lou (Louise) Williams, has been having Keytruda treatments for approximately 6 months and in this time has seen her mesothelioma tumours reduced significantly. Lou's experiences are described in her blog.
Keytruda costs approximately $9,000 per treatment. At present Merck is offering to pay for 3 of the first 6 treatments (the 2nd, 4th and 6th treatments). This means that it will cost approx $30,000 for the first 6 treatments, by which stage an assessment should be able to be made as to whether the treatment is working. If the treatment is successful then it will continue on a 3 weekly basis at a cost of $9,000 for at least 2 years, totalling approx $300,000. At present Keytruda is on the PBS only in relation to melanoma.
Mesothelioma sufferers who have a current claim at common law can seek the cost of Keytruda treatment. The test as to whether a defendant is required to pay treatment expenses is whether the expenses are reasonable in the circumstances of both the plaintiff and the defendant. There are a number of cases on foot where the cost of Keytruda has been claimed. Defendants have challenged their liability to pay for the treatment and we are waiting for a decision of the Court. We are however hopeful that a Court will award the cost of Keytruda (at least the cost of the first six cycles with some allowance for the likelihood that the treatment may be successful and continue) where the treatment has been prescribed by the treating oncologist and in the context of promising early results from the Phase I clinical trial and the lack of any effective second line treatment for Mesothelioma.
Applications have also been made to the Dust Diseases Board for the payment of Keytruda. To date the Dust Diseases Board has declined to make payments on the basis that the drug is not TGA approved. The test however in relation to the treatment expenses payable by the Board under the Workers Compensation Act 1987 is whether the treatment is 'reasonably necessary'. For persons who have already settled a claim at common law and been refused the treatment cost for Keytruda by the Dust Diseases Board, there is an avenue to appeal the decision of the Dust Diseases Board. Such an appeal is brought in the District Court of New South Wales. In a no cost jurisdiction which means that if the case is not successful you will not be ordered to pay the Board's costs.
Keytruda details:
If you would like further details about any of the above, please contact me (Lou Williams) via my email eradicateasbestos@gmail.com
I will then help you with further information.
Lou's update on Keytruda No. 10:
Overnight in hospital last Wednesday I had my no. 10 infusion of Keytruda. While waiting for my bed, I walked 3 kms to the local shopping centre (caught the tram back to the hospital area!), and upon discharge the next day walked 2 kms through the lovely gardens into the city of Melbourne.
By the time I arrived home - fatigue had set in, not sure if it was lack of hospital overnight sleep or a combination of that and Keytruda! Fatigue lasted 5 days however NO PAIN! This morning some fluid in the tummy area however nothing drastic.
Discharged at 8.30am and walked through Fitzroy Gardens into city!
Nana enjoying the gardens with my lovely Melbourne grandkids Ruby, Henry and Oliver.
I have been enjoying our beautiful Spring weather and pottering in our garden. Every day new flowers appear due to the recent rains. The garden has been sadly neglected over the last couple of years due to illness, drought and lack of water so I am pleasantly surprised with my garden now!
Lilacs, daphne, violets, bearded iris, roses - not many flowers however little surprises every day!
Even Charlie has enjoyed the garden finding a shady spot to nap.
Our lavenders and gum trees blending in to the landscape.
Beautiful bearded iris
Keith's update:
Keith has now had 14 zaps of radiation - only 21 to go! It is a 6 hour round trip to the hospital and home again (the radiation appointment takes a minimum of an hour or so). He is getting fatigued however handling it well.
Lou's petition fast track Keytruda (in Australia) on the PBS (Pharmaceutical Benefits Scheme):
We now have over 4,000 signatures and valuable comments - a huge thank you to all who have signed, commented and shared the petition. I am currently in discussion and further updates to follow. Please keep sharing - we need more signatures. In unity we are making this possible!
(This is the link below)
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
Nat's mum has Mesothelioma in NSW on life saving Keytruda costing $9,000 per dose. (Nat kindly shared her mum's story).
Lou (Louise) Williams
Australia
17 Oct 2015 — Natalie's mum was diagnosed in Oct 2014 with Mesothelioma. The diagnosis for mum and our close knit family was absolutely devastating. Mum contracted it when my dad and her built us a cubby house over 30 years ago. Mum was given no hope of treatment after her initial first round of chemo and was told by her oncologist that there was no point in her making any further appointments as there was nothing they could do, she was given 3 months at best and she should go home and spend time with her family. Mum before this disease was the life of our family and the most attentive of grandmothers. She went from fun loving, active and dependent to bed ridden and gravely ill, in daily pain within a very short space of time. Mum had all but given up until we heard about the wonder drug Keytruda. It gave mum the hope she needed to keep fighting. On discussing the treatment with her oncologist we discovered that the drug was not on the PBS for Mesothelioma and it would cost approx. $9000 every three weeks. Mum is a 69 year old pensioner!!! The family has rallied around and we are paying for her treatment privately. She has always been there for us and now we are trying to be there for her but the financial cost is crippling. Mum had her first dose of Keytruda last week, we are keeping our fingers crossed and supporting Lou's campaign to have this wonder drug put on the PBS for Mesothelioma as its the only chance mum has of regaining her life back.
Wednesday, September 30, 2015
Keytruda - Mesothelioma Australia wonder drug!
Hi all, the last time I put an entry into my blog was a few weeks ago - so much has happened since then. - all good!
In between doses 7 and 8 we went to Tasmania for a few days of retreat/relaxation, touring and reconnecting with good friends. A wonderful weekend was spent in the little cove of Coles Bay adjacent to Freycinet National Park, Wineglass Bay and the amazing Hazzard mountain ranges. We visited the seafood farm and dined that night on scallops, oysters and prawns washed down with a glass of Tassie wines. Exploring Freycinet National Park and the various bays including Honeymoon Bay (shaped like a wine glass) was spectacular once we reached our destinations on foot and could appreciate the water views from every angle including the lighthouse walk.
While in Tasmania we both forget about our 'cancers' and just enjoy the moment and spending time with our friends. Once back to the mainland it is back to reality and endless medical appointments - all part of life atm. We went to Tassie (Tasmania) and return by the newly fitted out ferry Spirit of Tasmania overnight - great ship and very smooth crossings.
We came back for no. 8 dose 3 September with me feeling wonderfully fit apart from a bit of fluid buildup in the tummy area. A scan on 1 September showed again shrinkage of fluid and tumours (when you compare the overall scans from when I started on Keytruda there is very much significant shrinkage). A few days after no. 8 Keytruda feeling fighting fit - I started to get busy in our garden and dragging tree branches, picking up branches/twigs, pruning etc, then I started to get a nagging bone pain in the left hand hip area shooting into the back area of a radius of about 4 inches. I find it can come on at night lying down in bed or occassionally during the day. Fluid continues to be a slight problem in the tummy area HOWEVER nothing major. Bone pain can be a side effect of Keytruda and this appears to be what is happening at the moment, so Panadol osteo capsules and when needed morphine 10 or 20 mg capsules. It does not stop me from doing anything - I have quality of life back being on Keytruda, appetite still there, no oxygen needed, weight on increase, bloods all good and no blood transfusions for weeks now. Walking heaps and back enjoying life with family and friends plus walking everywhere, up until a few weeks ago all of this would not have been possible as my body was literally shutting down, on oxygen, weight depleted, bloods not making red cells, extremely weak and it was only a matter of a few days until I was at death's door SO thank you Keytruda. I am on Keytruda for life (every 3 weeks overnight in hospital for the infusion similar to chemotherapy). I call it immunotherapy as it stimulates your immune system to fight the nasty tumour cells.
Keith was diagnosed 3 years ago with prostate cancer, he had the major robotic surgery to remove the prostate gland and was fine after that. He needed to have PSA blood tests every few weeks. In the last few months it has gradually been going up, which indicates that there is still minute nasty tumour cells in the prostate area. So Keith commenced radiation in Melbourne yesterday. A total of 37 treatments Monday to Friday with the weekends off! He will finish a few days before the Asbestos Awareness International Conference run by (ASEA Asbestos Safety and Eradication Agency) in Brisbane, Queensland 22 to 24 November. We are attending and looking forward to it very much. A great informative conference last year with fabulous speakers and so much Networking information. I am speaking this year on Keytruda.
Our motto in life is to live in the moment and deal with what presents at the time. The universe will take care of the big picture - no use worrying about it!
We have lost some beautiful warriors to mesothelioma and continue to do so. Their lives have been taken early thanks to deadly asbestos greed! We must unite together to eradicate asbestos, keep raising awareness and education.
My petition to get Keytruda in Australia fast tracked on the PBS (Pharmaceutical Benefits Scheme) is making progress. I am in confidential talks atm so cannot disclose much however all are working behind the scenes. A huge thank you to all who have signed and shared the petition. Please keep doing so. This is the link to copy and paste below.
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
In between doses 7 and 8 we went to Tasmania for a few days of retreat/relaxation, touring and reconnecting with good friends. A wonderful weekend was spent in the little cove of Coles Bay adjacent to Freycinet National Park, Wineglass Bay and the amazing Hazzard mountain ranges. We visited the seafood farm and dined that night on scallops, oysters and prawns washed down with a glass of Tassie wines. Exploring Freycinet National Park and the various bays including Honeymoon Bay (shaped like a wine glass) was spectacular once we reached our destinations on foot and could appreciate the water views from every angle including the lighthouse walk.
While in Tasmania we both forget about our 'cancers' and just enjoy the moment and spending time with our friends. Once back to the mainland it is back to reality and endless medical appointments - all part of life atm. We went to Tassie (Tasmania) and return by the newly fitted out ferry Spirit of Tasmania overnight - great ship and very smooth crossings.
We came back for no. 8 dose 3 September with me feeling wonderfully fit apart from a bit of fluid buildup in the tummy area. A scan on 1 September showed again shrinkage of fluid and tumours (when you compare the overall scans from when I started on Keytruda there is very much significant shrinkage). A few days after no. 8 Keytruda feeling fighting fit - I started to get busy in our garden and dragging tree branches, picking up branches/twigs, pruning etc, then I started to get a nagging bone pain in the left hand hip area shooting into the back area of a radius of about 4 inches. I find it can come on at night lying down in bed or occassionally during the day. Fluid continues to be a slight problem in the tummy area HOWEVER nothing major. Bone pain can be a side effect of Keytruda and this appears to be what is happening at the moment, so Panadol osteo capsules and when needed morphine 10 or 20 mg capsules. It does not stop me from doing anything - I have quality of life back being on Keytruda, appetite still there, no oxygen needed, weight on increase, bloods all good and no blood transfusions for weeks now. Walking heaps and back enjoying life with family and friends plus walking everywhere, up until a few weeks ago all of this would not have been possible as my body was literally shutting down, on oxygen, weight depleted, bloods not making red cells, extremely weak and it was only a matter of a few days until I was at death's door SO thank you Keytruda. I am on Keytruda for life (every 3 weeks overnight in hospital for the infusion similar to chemotherapy). I call it immunotherapy as it stimulates your immune system to fight the nasty tumour cells.
Keith was diagnosed 3 years ago with prostate cancer, he had the major robotic surgery to remove the prostate gland and was fine after that. He needed to have PSA blood tests every few weeks. In the last few months it has gradually been going up, which indicates that there is still minute nasty tumour cells in the prostate area. So Keith commenced radiation in Melbourne yesterday. A total of 37 treatments Monday to Friday with the weekends off! He will finish a few days before the Asbestos Awareness International Conference run by (ASEA Asbestos Safety and Eradication Agency) in Brisbane, Queensland 22 to 24 November. We are attending and looking forward to it very much. A great informative conference last year with fabulous speakers and so much Networking information. I am speaking this year on Keytruda.
Our motto in life is to live in the moment and deal with what presents at the time. The universe will take care of the big picture - no use worrying about it!
We have lost some beautiful warriors to mesothelioma and continue to do so. Their lives have been taken early thanks to deadly asbestos greed! We must unite together to eradicate asbestos, keep raising awareness and education.
My petition to get Keytruda in Australia fast tracked on the PBS (Pharmaceutical Benefits Scheme) is making progress. I am in confidential talks atm so cannot disclose much however all are working behind the scenes. A huge thank you to all who have signed and shared the petition. Please keep doing so. This is the link to copy and paste below.
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
Friday, September 11, 2015
Mesothelioma Survivor Lou Williams Steps Up Her Drug Advocacy Efforts
Mesothelioma Survivor Lou Williams Steps Up Her Drug Advocacy Efforts
Lou lost her father to mesothelioma in 1985 and she has battled the disease herself for nearly 13 years. With the help of a new drug, Keytruda, Lou’s tumors have begun shrinking and she has a new lease on life.
“Keytruda has given me back my life, as my body was literally shutting down,” Lou told MesotheliomaHelp via email.
Expert Insight
“I am now once again living my life with quality, strength and determination.”On Sept. 3 Lou will have her eighth dose of Keytruda, an immunotherapy drug from Merck approved in the U.S. and Australia for melanoma, but not yet approved in either country for mesothelioma. For Australians, that means a mesothelioma patient must pay thousands of dollars per dose, administered every three weeks—a deal breaker for many.
Lou Working With Australia’s Pharmaceutical Benefits Scheme
Keytruda is being touted as one of the biggest breakthroughs in mesothelioma treatment. In the simplest of explanations, Keytruda enhances the body’s immune response to cancer, allowing natural defense mechanisms to kick in and fight mesothelioma tumors. A recent U.S. clinical trial found Keytruda to be effective in controlling mesothelioma tumors in three-fourths of patients, leading researchers to say the results are “encouraging.”After having exhausted all of her treatment options earlier this year and being at death’s door, Lou has, with regular Keytruda doses, rebounded beyond what she and others thought was possible. She said in an August 20 Examiner article that her palliative care nurse, husband and oncologist all say her recovery has been “miraculous.”
It has also been expensive. Lou acknowledged in a recent blog post that having quality of life back is priceless, but “Our credit card is taking a battering.”
To make Keytruda more accessible for other mesothelioma sufferers, Lou’s goal is to get the drug added to the Pharmaceutical Benefits Scheme (PBS). This would allow Australian oncologists to offer the treatment to mesothelioma patients free of charge or for a negligible amount.
The PBS is a government run service available to all Australian residents who hold a current Medicare card. Through the PBS, the Australian government subsidizes the cost of medicine for most medical conditions.
“We need to have Keytruda in the PBS list alongside melanoma so others diagnosed with mesothelioma can have another treatment option to discuss with their oncologist,” Lou said.
Lou and her husband met with their local Federal Member of Parliament in late July to get the PBS to accept Keytruda on the mesothelioma treatment list. She reported in her August 4 post that her local Member Parliament’s office told her that they have made initial contact with the drug company and are anticipating discussions later this month, a development Lou described as “very promising”.
Lou is passionate about seeing asbestos banned globally. Her work with the Asbestos Diseases Foundation of Australia, Asbestos Disease Awareness Organization of the U.S., and countless other organizations, as well as her non-stop media tour to get the word out about the dangers of asbestos, has impacted people worldwide.
But for Lou, it still is not enough.
“It would mean the world to me knowing that those diagnosed with mesothelioma can have freedom and peace of mind choice without the worry of cost to consider,” said Lou.
Read more about Lou on MesotheliomaHelp.
Follow Lou’s mesothelioma and advocacy battle on her blog at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
You can contact Lou at eradicateasbestos@gmail.com.
Photo Credit: The Examiner
About the Author - Nancy Meredith
Nancy is a blog and content writer with more than 20 years of professional experience. Nancy has been writing about mesothelioma and cancer for close to five years.Lou's petition to get Keytruda fast tracked onto the Australian PBS (Pharmaceutical Benefits Scheme/free list) for everyone with Mesothelioma to have this life saving option for free without the burden of finding funds to have this drug every 3 weeks. With your help in unity we can do this!
Please highlight link below, sign the petition and share, thank you.
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
https://www.change.org/p/federal-health-minister-sussan-ley…
https://www.change.org/p/federal-health-minister-sussan-ley-keytruda-on-pbs-pharmaceutical-benefits-scheme-for-mesothelioma-life-saving-drug?recruiter=55915192&utm_source=share_petition&utm_medium=copylink
https://www.change.org/p/federal-health-minister-sussan-ley…
Lou Williams Win News TV interview on life saving drug Keytruda. I am campaigning to have this drug fast tracked on the PBS for others with mesothelioma as it has shown great promise in treating this cancer. I believe those living with mesothelioma should have the option of this drug Keytruda (in discussion with their oncologist) and not have to have the worry of finding the 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 on death's door!
Tuesday, August 4, 2015
Mesothelioma - Keytruda amazement!
Dose no. 7 Keytruda will be next Weds 12 August overnight in hospital. I have Keytruda every 3 weeks (this is my 20th week since commencing Keytruda). Every day I am getting stronger - it really is amazing/a miracle when I remember as to how ill/on death's door that I was earlier this year and now full of beans and enjoying quality of life once again.
Last week I ventured into the city of Melbourne by myself in the train (takes an hour) to meet up with my daughter Jo and little grandsons at a little cosy cafe and walk in the city with a walk to Federation Square and the excellent kids activities there.
Lou's email
eradicateasbestos@gmail.com
Last week I ventured into the city of Melbourne by myself in the train (takes an hour) to meet up with my daughter Jo and little grandsons at a little cosy cafe and walk in the city with a walk to Federation Square and the excellent kids activities there.
Next back on the train one station to Southern Cross to meet up with Suzanne, her beautiful mum Helen and Suzanne's son Jono at the chocolate cafe for a chat/coffee. They were here on holiday from Perth, Western Australia. Suzanne's dad (Helen's husband and Jono's grandfather) died of pleural mesothelioma. Last year Suzanne was in Melbourne and we caught up with her and Linda Thomas came along too - this time Linda was in UK having a ball!
Thursday a visit to Monash hospital Clayton as Keith had a PET/CT scan (2 year's ago Keith had robotic surgery to remove his prostate due to cancer being contained there, unfortunately his PSA readings over the last few months have shown that the cancer has come back somewhere, so hence the scan. Weds (tomorrow he will see his radiation oncologist for results and probably start a regime of 7 to 8 weeks intensive radiation. He had put off having the scan/treatment since earlier this year due to my ill health at the time as for a few months he became my 24/7 carer, however now that I am improved and have not fallen off the perch, it is now time for us to concentrate on getting him fixed up)! So I jumped on the bus and headed back to Bentleigh Station shopping centre and kept out of the cold/rain/wind for the 2 hours. I enjoyed walking and wandering in and out of the little shops including 2 op shops and stopped for a coffee in Copenhagen Cafe. After the hospital visit for Keith we called into see friends who have just moved over to Australia from Thailand and their darling little girl, then stayed the night with family close by. My sister in law Cheryl cooked a lovely meal and we enjoyed a glass of wine - I am back enjoying a glass of vino - first time for months that I have even felt like it without feeling nausea coming on! Next day we took off for home - stopped at Moonee Ponds/Puckle St to have a sandwich/coffee at Cafe 21 -
great food and coffee, then while Keith sat in the car and stayed warm with his head cold, I wandered around the supermarket for provisions as I was cooking lunch the next day (Saturday) for family at home!
Friday evening I made desserts for the next day - Tiramisu, a very fiddly chocolate flan cake and steamed mandarin/fruit pudding, plus set the table for 13 including happy birthday decorations as we were celebrating 3 August birthdays! I had lots of energy to make the desserts/set the table, by 9pm I was slightly exhausted however just amazed that I could do what I did! Saturday cooked roast lamb infused with garlic/rosemary and lemon plus roast vegetables. A great luncheon and birthday celebration.
Sunday we went for a short drive then I did some gardening maintenance - /kneeling/bending to transplant violets and pulling out a few small weeds - both of which I could not have done a few weeks ago!
Monday the palliative team nurse came to visit, this particular nurse had not seen me since April when she thought that would be the last time as she knew it was just a matter of time before I would die as I was so weak, ill, sickly in colour etc. This nurse was absolutely amazed to see me looking so well and said it truly is a miracle! She could not wait to report back to the office with the good news as it is rare for them to see this happen ever! I asked her if anyone she knew was taking Keytruda (for melanoma or other cancers) she said no as it was so expensive at the moment. (Keytruda has been approved on the PBS/free list for Melanoma cancer as from early September 2015) however not for Mesothelioma cancer. However I am working on this and I will get it on the PBS for myself, and for everyone else to be given the option with their oncology team to have a choice without the expense. Good news to report back from my local Member Parliament's office - They are making representations and have had some initial contact with MSD (drug company) and are looking to have some further discussions later in the month. This is very promising! So many warriors around Australia are contacting me in the hope of having Keytruda or at least the choice however it is not an option due to the expensive costs. Our credit card is taking a battering however I have quality of life back and money cannot buy this!
Lou's email
eradicateasbestos@gmail.com
Friday, July 24, 2015
Keytruda miracle mesothelioma cancer
Hi from Lou
On Weds 22 July 2015 overnight in hospital I had my no. 6 dose of the wonder drug Keytruda infused (similar to chemotherapy). A blood test prior to the drug showed that all my bloods were up including my haemoglobin at 124! Since Nov 2014 it has been around 100, 90s and as low as early 70s needing blood transfusions every few weeks, so an amazing turnaround to see my blood making red blood cells and the reading going up!
Haemoglobin is an iron-containing protein in red blood cells. Haemoglobin carries oxygen around the body and without enough of it your muscles and organs don’t get all the oxygen they need.
My weight has also increased in the last 3 weeks going up to just under 50 kilos (3 weeks ago 43.5 kilos).
I was given the all clear to fly 2 hours to Queensland (Gold Coast) in between my treatment No. 5 and No. 6. The last 30 mins of my flight to Queensland saw my tummy/chest tightening and swollen making breathing slightly difficult, however coming home it was much less laboured. Considering that flying was not an option from Jan 2015 due to my body shutting down, Keith and myself could not stop smiling at each other knowing that this really is a miracle how my health thanks to Keytruda has kicked started my immune system giving me a lifeline/my quality of life back. To be able to travel/fly even though a short one is so fantastic as we love travelling so much.
We enjoyed our time on the Gold Coast/Brisbane catching up with family and friends in between having rests to recuperate/get my energy zapping and loving the warmer weather and bright sun!
My beautiful daughter Debbie, and her 2 little girls (my grandkids) Meadow and Evie.
I believe so much in this wonder drug Keytruda. January 2015 my body was shutting down and there was nothing that could be done, I literally had no control over my mind/body - on oxygen, weight dropping off fast, nausea, pain .... . Now no pain, no medication, no oxygen! It has shown to have significant shrinkage for pleural mesothelioma. In my case I have both pleural and peritoneal mesothelioma and my recent scans have shown significant shrinkage in both areas including fluid shrinkage.
This photo was taken on my birthday in April 2015 using oxygen, extremely fatigued and weight dropping off fast.
I am so wanting it to be available to all mesothelioma patients as another choice of treatment option to be discussed with their oncologist team. Today Keith and myself had a meeting with our local Federal Member of Parliament to discuss the process of getting Keytruda put on the PBS/free list to be available for Mesothelioma cancer. It has been approved and will be on the PBS list as of 1 September 2015 for Melanoma cancer however not for Mesothelioma cancer. Thank you to our Federal Member of Parliament who was very helpful and I feel will help me to do this for myself and other Mesothelioma patients.
Lou's email address
louise_w_2000@yahoo.com
eradicateasbestos@gmail.com
On Weds 22 July 2015 overnight in hospital I had my no. 6 dose of the wonder drug Keytruda infused (similar to chemotherapy). A blood test prior to the drug showed that all my bloods were up including my haemoglobin at 124! Since Nov 2014 it has been around 100, 90s and as low as early 70s needing blood transfusions every few weeks, so an amazing turnaround to see my blood making red blood cells and the reading going up!
Haemoglobin is an iron-containing protein in red blood cells. Haemoglobin carries oxygen around the body and without enough of it your muscles and organs don’t get all the oxygen they need.
My weight has also increased in the last 3 weeks going up to just under 50 kilos (3 weeks ago 43.5 kilos).
I was given the all clear to fly 2 hours to Queensland (Gold Coast) in between my treatment No. 5 and No. 6. The last 30 mins of my flight to Queensland saw my tummy/chest tightening and swollen making breathing slightly difficult, however coming home it was much less laboured. Considering that flying was not an option from Jan 2015 due to my body shutting down, Keith and myself could not stop smiling at each other knowing that this really is a miracle how my health thanks to Keytruda has kicked started my immune system giving me a lifeline/my quality of life back. To be able to travel/fly even though a short one is so fantastic as we love travelling so much.
We enjoyed our time on the Gold Coast/Brisbane catching up with family and friends in between having rests to recuperate/get my energy zapping and loving the warmer weather and bright sun!
My beautiful daughter Debbie, and her 2 little girls (my grandkids) Meadow and Evie.
I believe so much in this wonder drug Keytruda. January 2015 my body was shutting down and there was nothing that could be done, I literally had no control over my mind/body - on oxygen, weight dropping off fast, nausea, pain .... . Now no pain, no medication, no oxygen! It has shown to have significant shrinkage for pleural mesothelioma. In my case I have both pleural and peritoneal mesothelioma and my recent scans have shown significant shrinkage in both areas including fluid shrinkage.
I am so wanting it to be available to all mesothelioma patients as another choice of treatment option to be discussed with their oncologist team. Today Keith and myself had a meeting with our local Federal Member of Parliament to discuss the process of getting Keytruda put on the PBS/free list to be available for Mesothelioma cancer. It has been approved and will be on the PBS list as of 1 September 2015 for Melanoma cancer however not for Mesothelioma cancer. Thank you to our Federal Member of Parliament who was very helpful and I feel will help me to do this for myself and other Mesothelioma patients.
Lou's email address
louise_w_2000@yahoo.com
eradicateasbestos@gmail.com
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