Wednesday, April 6, 2016

Trevor Grant, Mesothelioma warrior tells his story How Keytruda gave me back my life!

Petition update

HOW KEYTRUDA GAVE ME BACK MY LIFE...Trevor Grant, 64 yrs, Melbourne, Victoria, Australia

Lou (Louise) Williams
7 Apr 2016 — 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.
Hi Lou,
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.
Best wishes, Trevor Grant
(We have spoken at length via phone and plan to meet up soon).
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.
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.

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.

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.

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.

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.

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.

If you are having trouble copyng the above link to open the petition please go on to
Search: Keytruda Mesothelioma PBS Lou Williams

Lou's email

Another blog coming within next few days and an update on what has been happening in my life since my last blog.

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