A Diary of a Mesowarrior with Mesothelioma. Stormy Weather,Explaining PDL 1 and clinical trials


We have been battered by storms this weekend with the wind howling day and night.

Ray saw 2 trees down as he walked Louis up the lane yesterday.

We did get out to go shopping. Well we were blown there really and walking from the car parks wasn’t an easy task.

The shops were packed although coming through the till was OK. No long queues as yet.

Image result for christmas

We went to get a Christmas decoration and to be honest there was not much there on the shelves. No wonder people shop on line.

It has suddenly come to me I really should celebrate this year as my Keytruda trial has given me back the ability to be here for another year. I have been so wrapped up in hospitals and appointments, needles, PICC line, drugs and fighting for Asbestos awareness that I have forgotten that fact.

The mind is just not focusing on the fact I do not have to fight any more I have a respite from that. I dont know how long I dont want to know really. I just should be enjoying life.

I have a very broken body from the disease that has taken away 1 third of my lung at the bottom. The hard shell that was growing around it doesn’t drop off. The chemo damage doesn’t heal. The peripheral neuropathy is still there and is hitting my balance at times, The leg oedema, decease related is stable. Shortness of breath on exertion and pains in the Lung all disease related but HEY!!! I can live with all that if the cancer has stopped and shrunk to destruction.

I have got to build up muscle power and get myself as healthy as possible so a New resolution has to be made.  USE a walking stick. Amazing how pride is holding me back. And they say pride comes before a fall.

More camping and more fun has to run my life. I have a whole lot of living to do.


Lou  is doing very well with her petition in Australia but A spokeswoman for Keytruda’s manufacturer, Merck Sharp & Dohme (Australia) Pty Ltd, said rare cancers were difficult to research due to fewer people enrolling in clinical trials and this could delay applications for registration and reimbursement.–

I dont get that comment about not enough people going for trials. That is not a problem in UK Our Doctors are always amazed at how patients put themselves forward for trials it is how our research teams go forward. What does happen here is that mesothelioma gets left out of the trials by the Drug companies and we have to change their way of thinking. At last in UK the Rare is being dropped from their speeches at conferences.

There are more people dying of Mesothelioma than are killed on the roads now.

Also –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.

This is why it would be absolutely fruitless to start a petition here as we have a system of trials linked to the US

Clinical trials are research studies involving people. They test whether particular treatments are safe and how well they work. (‘Trial’ in this sense means testing something, and has nothing to do with legal trials or court cases).
We need to know: Does a treatment work? Does it work better than other treatments? Does it have any side effects? Clinical trials are designed to answer these questions and improve health and quality of life for patients. Until well-designed trials have been carried out, we simply do not have enough evidence to know if a treatment is both effective and safe. Without trials, there is a risk that people will be given treatments which do not work and which may even be harmful.
Experimenting and testing have long been a part of medicine, and there are many different kinds of trial. (See below for an explanation of Phase 1, Phase 2, Phase 3 and randomised controlled trials). It is only quite recently that randomised clinical trials (RCTs) have been generally recognised as the best way to compare different approaches to preventing and treating illness. They can be used to compare drugs, but also to compare other types of treatment, across a range of conditions.
But what has happened with Keytruda is it isn’t just for one cancer but for many. 22 cancers have been trialled It is working on most of them for some patients. It isnt for everyone and PDL 1 is sourced within the Bi-Op tissue.  Patients need to  test positive for a biomarker called PD-L1. (PD-L1 is a protein that binds to the PD-1 checkpoint on immune cells; cancers often make PD-L1 as a way to ward off an immune attack.) In a phase I clinical trial, about 22% of NSCLC tumors tested had PD-L1 expression at a level of at least 50%. This subset of NSCLC had a response rate of 41%. Both nivolumab and pembrolizumab are being tested for PD-L1-positive NSCLC in randomized phase III trials compared to standard-of-care chemotherapy as first-line treatment.

Several other PD-1/PD-L1 checkpoint inhibitors are also in late-stage clinical testing. For reference, the PD-1 and PD-L1 inhibitors and the relevant pivotal phase III trials are listed below:

– See more at: http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/lung-cancer#sthash.Lf3mOxTh.dpuf

These are trials in the US that are coming to us in the UK from 2016 but we Mesowarriors must make sure is that Mesothelioma is always added to  these trials.

We have to remember that they are for all cancers its not like Chemo any more.

Also for those who do not match the criteria of Immunotherapy there are other drugs out there being trialled with good results.


Ray and I are in the Mesothelioma UK Newsletter this month Loving the double act


If you like Puzzles have a look at Rays daily puzzles http://onestopmesothelioma.co.uk/your-daily-puzzle.html

todays puzzle




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