Living With Mesothelioma -My Diary- Thunderstorm,Asbestos in Schools and so many Trials are there for Mesowarriors UK


We have been chilling out today as it is very warm after a horrific Thunderstorm last night

I was up till the early hours so I saw all this. Louis even went out in it. Then the heavens opened and it poured down.

So we are all safe and calm today.

We have been to the Park with the dog and a woman was riding her horse. I held Louis on a lead but he didn’t really mind the horse. i thought he might see it as a huge dog. As she was on the bridle path we had to walk on up a path Louis hasn’t been before so it was a change. Funny how you can be in the same park and yet see it looking so different. They have put a fence up to keep the sheep in which is better and safer for the sheep. I was surprised we were the only ones there on a Saturday

but it was hot.

Julie Winn

Yesterday I met up with a really nice woman who spoke about the schools Julie Wynn

She has taken over from Michael Lees and runs Asbestos in Schools.

The government spent an extra £6m on a survey of 8,000 schools to check the condition of school buildings across England – but UNISON concerned that the survey will not check for asbestos.

More than  75% – 80%  of UK schools still contain asbestos, says the union, so the assessment as “purely cosmetic” and will not address government failure to address the dangers to school pupils and staff.

Julie Winn, the chair of the Joint Union Asbestos Committee (JUAC) and member of the Asbestos in Schools Group, said: “The extension of the property data survey programme is a golden opportunity for the government to collect data centrally on the presence and management plans for asbestos in UK schools.

“Without this information, the scale of the problem cannot be known and proportionate resources cannot be planned for and allocated.”

And Ms Winn asked: “Why has asbestos been inexplicably excluded from this survey? We believe that it suggests that the government is burying its head and does not want to know the true scale of the problem and how much it will cost to fix it”.

So the percentage of Asbestos is higher than they say.

I did say that Claire Cowley went to her school and asked to see the asbestos register and they produced it but we wonder how many schools would be able to do that.

But it was a great talk and believe me she is really getting under way with the problem.

Now Lou is having a great result with Keytruda everyone is wanting this very expensive drug that hasn’t been through all the trials so it is a long way from being available here. It is a very expensive drug so the thought in the Medical world is No drug is a cure (yet) and so we must explore development of many options. Also the evidence that keytruda may work best in patients with many mutations may also suggest that this is something that should be considered after failure of other treatments when the cancer may be more genetically complex.

That is how it has been used on Lou in Australia and myself. We were both at death’s door, we don’t kid ourselves we were so its been given a last resort. Our genes were at the right point to accept it. So this seems a very good plan. The last back up.

There are so many great drugs out there as I keep saying.

http://www.nhs.uk/Conditions/mesothelioma/Pages/clinical-trial.aspx?CT=0&Rec=0&Countries=United+Kingdom

The first 10 are Ganetespib With Platinum, in Patients With Malignant Pleural Mesothelioma

A Phase 1 Dose Escalation Study of VS-5584 Administered in Combination With VS-6063, in Subjects With Relapsed Malignant Mesothelioma

Placebo Controlled Study of VS-6063 in Subjects With Malignant Pleural Mesothelioma

A Phase II Trial to Assess TroVax® Plus Chemotherapy in Patients With Malignant Pleural Mesothelioma

http://www.bci.qmul.ac.uk/news/in-the-press/item/qstarvingq-mesothelioma-a-new-treatment-approach-7

This TRAP trial is very good as a warrior has had over 40% shrinkage

and of course the Adams trial is at S Barts.

Dont sit back and feel there are no trials there are and they should all be given a chance they are the new Drugs out there this is the future treatment.

Linda Wride spoke in her blog of a trial later in the year I quote :-

There is a mesothelioma-specific clinical trial in the pipeline in Oxford (and elsewhere) which will start recruiting later in the year.  The drug is Vinorelbine, one of a number of drugs developed from the periwinkle plant.  It stops the growth of cancer by preventing cancer cells splitting into two new cells. It has been used as a first line treatment for mesothelioma and other cancers so is not a complete unknown, unlike the early phase trials and dose escalation studies he has taken part in before. However, there has been no randomised evaluation of its effectiveness as a second line treatment in mesothelioma, which is what this forthcoming multi-centre trial will do. The trial is being lead by Prof Dean Fennel of Leicester University.  For more details click here and here. – See more at: http://doingsomethingpositive.blogspot.co.uk/2015/04/back-in-system.html#sthash.EYEvVY0k.dpuf
And the same Doc Prof Fennel and JS at Barts has Phase 2 on my trial so please enquire on all these trials and support them. I can’t believe I have had people say to me they aren’t spending money on research, there are we are the patients they need to do the research on . I had to research and research to find my trials but this year they are handing them out and backing them with money. Ok I will stop nagging he he he he he he !!!!
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