A Diary of a Mesowarrior Living With Meothelioma -A very weird weekend


Yesterday was a funny day. It started with a message from a Mesowarrior messaging to say she was near by so could she drop in. I had to get out of my pink dressing gown and shower and tidy up.

Sharon Kember Brazier's profile photo

She came loaded down with a huge bouquet of flowers and a toy for Louis. Which he loved even if he played up and didn’t like her looking at him. He did calm down.

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We had a good catch up and then she was off home.

Facebook kept me busy as so many people were so annoyed over the Budget. I dont usually do Politics in  such a huge way on my wall but we were so enraged over cutting money to the most vulnerable. True disabled people. The whole mess ahs to be sorted out but Social Media has bought about a U turn and

Iain Duncan Smith quits over planned disability benefit changes.

So it has been a real political weekend

We then booked Louis into Kennels for May when I go to iMIG

imig

I will be talking here as Prof Dean Fennel is so pleased with my results on the trial MK3475 (Keytruda) They are shocking the world and made even more amazing when Lou in Australia has announced that it has failed her.

She has written 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.

A scan on 24 Feb 2016 showed NO FLUID, however it did show new tumours growing inside both lungs.

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.

16 March 2016 into hospital for my overnight Keytruda infusion.  I had the usual blood tests prior to Keytruda – and MY BLOODS WERE EXCELLENT!

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.

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.”

I had the 25 minute claustrophobia, head pounding MRI and waited for Dr Zimet to do his rounds the next morning.

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.

I had my first dose of chemo yesterday and was out of the hospital by 3.30pm headed for home!

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! http://asbestosaustralia.blogspot.co.uk/2016/03/mesothelioma-progression-and-kick-up.html?spref=fb

She must be so devastated as we put all our hopes on Keytruda. The only thing is that by paying private she didn’t have the large dose I had on the trial. Mine was 10mg/kg.

The next trial that has just opened here is 200mg no matter what you weigh so they are still experimenting on the dose.

But there is hope that Chemo has worked better when a patient has come off Keytruda. So we pray that she has success and can survive longer.

adao lou and me

Bernie Banton Foundation Australia have, by a strange coincidence, started a petition that is really sums up the problem in Australia.

 

Petitioning Minister for Health the Hon. Sussan Ley MP

Make it possible to fast track drugs to treat asbestos & other rare cancers onto the PBS.

Mesothelioma is a rare cancer only known to be caused by exposure to asbestos. There is currently no cure, with less than 5% of people living 5 years after being diagnosed.

Mesothelioma is a cruel disease, I know, I lived the mesothelioma journey with my late wife Julie Bastian, for 3 years, 1 month and 7 days, nursing her at home until she died in 2011.

Over 750 people in Australia were diagnosed with mesothelioma in 2014.

In Australia, one person dies every 12 hours from the effects of mesothelioma.

The first, and only drug listed on the Australian Government’s Pharmaceutical Benefits Scheme (PBS) specifically for treating mesothelioma, is a drug called Alimta (pemetrexed). Alimta’s inclusion on the PBS took 4 years from 2004 (when it was released) to 2008.

Up until recently, the release of Alimta into the market place in 2004 was the last recognised advancement in the treatment of mesothelioma.

There are now new immunotherapy drugs being developed showing much promise in the fight against mesothelioma. One such drug is already listed on the PBS for use on advanced melanoma, which means a melanoma sufferer will pay approx $38.00 per treatment, but a mesothelioma sufferer will need to pay over $5,000 every three weeks to be treated with it – this is out of the reach of the average person.

We didn’t have the option of trying to save Julie’s life by her being treated with the new immunotherapy drugs. If they had been available, I sure know we would have expected to be able access it on the PBS.

Pharmaceutical companies are not applying to have these potentially life saving drugs listed on the PBS for use in treating mesothelioma and other rare cancers, as they do not have the trial data necessary for a successful application. To obtain this data would take many years due to the high number of patients needed to be trialed. The requirements can only be met in a short time frame when there are high numbers of people being diagnosed with a particular disease – melanoma is a perfect example of this.

The body that makes the decision on whether or not a drug should be listed on the PBS, the Pharmaceutical Benefits Advisory Committee (PBAC) cannot consider a drug to be listed on the PBS until the owner of the drug applies for it to be listed.

In short, if the developer of the drug does not apply for the drug to go on the PBS, then the PBAC cannot list it on the PBS.

Practical changes need to be made to the system to facilitate drug companies being able to successfully fast track applications for valid drugs to be listed on the PBS for treating rare cancers such as mesothelioma. Discussion papers have indicated this can be achieved without compromising current standards and safeguards.

The Bernie Banton Foundation is calling on the Federal Minister for Health, the Hon. Sussan Ley MP to act now to change the application process to allow fast tracking of drugs with potential for treating mesothelioma, and other rare and less common cancers, to be listed on the PBS.

To not do so, discriminates against sufferers with rare and less common cancers.

Signing this petition will give strength to the foundations advocacy efforts to persuade Minister Ley to change the status quo. The successful outcome of this petition could open up a whole new world of treatments for sufferers of mesothelioma.

Please sign and share, you could be helping save the life of current and future sufferers of rare cancers, including mesothelioma – you never know, it could be you!

Rod Smith – Awareness and Support Co-ordinator

Karen Banton – CEO

Bernie Banton Foundation https://www.change.org/p/to-the-federal-minister-for-health-please-make-it-possible-to-fast-track-drugs-for-treating-mesothelioma-and-other-rare-cancers-onto-the-pbs?recruiter=512117513&utm_source=share_petition&utm_medium=twitter&utm_campaign=share_twitter_responsive%20via%20@ChangeAUS

 

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