Probably nothing useful to add, but my mother has Pleural Mesothelioma and has been offerred the same trial (assume it is the CONFIRM trial). She was diagnosed back in December 2017 and has gone through 3 different rounds of chemo. Unfortunately she has now exhausted all chemo options - allergic reactions to 2 and the third (and final) hasn't been effective. Our view is that most of the trials are for drugs which could have a higher chance of working (given the development in meso drugs and research) and that unfortunately the placebo is a necessary evil. One thing we can't work it is if you can try the trial again (if you get the placebo). 

Would be interested in your view on private vs nhs too. We are considering Private if we can't get access to the newest drugs. Is it a different level of care?

Thanks so much for responding.  It is the CONFIRM trial.  We spoke to a nurse specialist yesterday and she said they are reluctant to let anyone pay for immunotherapy unless it is part of a compensation claim because of the high cost.  We did ask if you can find out later if you have had the placebo so you could then decide to go down the route of paying, but was told that they are blind trials and you never know.  Its like spinning a dice.  Not sure which way to go.  

My understanding is that the trial is a 2-1 (2 get the drug, 1 doesn't). I don't understand the blind nature of the trial, surely the doctors would know who gets the placebo, otherwise there would be little point in doing it? Unfortunately we have little choice but to take the trial as we have exhausted the chemo options. 

I was also reading an article in The Times last week about  2 new drugs that were being fast tracked by NICE. Might be worth asking about too.... larotrectinib and entrectinib. Both are being used in the US to treat Mesothelioma. 

There is no right answer about whether to take the trial or not. I have a view that the drugs on trial are newer and could be more likely to have a better effect than the platinum based chemo drugs that have been around for a while. I also think that this cancer is such a difficult one to beat that you need to be as aggressive as possible and take every chance to knock it back. The CONFIRM trial is at a later stage than others, so they must be pretty positive on it making a difference.  

Hope this all helps. 

You are right it is 2:1.  The blind bit is that the only people who know what drug is given are those running the trial.  You and your medical team don't know and can't find out.  This means that if you are given the placebo you never know, so you wouldn't know whether to go private to get the proper drug once it is established that the trial is not working.  Thanks for the nformation on the other drugs, I will have a look at them.

Thanks.

Hi Jayne, we are in the same position as yours and I was wondering if you managed to find out the immunotherapy drugs privately please? 

My husband is now on the trial.  He has shown some mild symptoms but not sure if this is the placebo effect.  We will have to wait and see.  With regards private treatment, this is available through our local NHS hospital but also through a private clinic, both in Bristol.  The drug is called Nivolumab.  We are going to wait for about 3 months and if it does not appear to be working we will endeavour to find out whether he has had the drug and will then go private.  Just praying for good results.  

Good luck! I hope it all goes well - would be really interested to know how you get on. Interestingly, the consultant we spoke to about the CONFIRM trial said they would tell us if we got the placebo. I would push a little to see if you can find out. That way you can at least know as my understanding is that a course of Nivolumab is very expensive. 

We have decided to go down a different route and are just about to start a Radiotherapy trial. Likewise praying for good results. 

Thank you. May I ask how old your husband is and when was he diagnosed please. My husband was diagnosed last year march, in April he had pneumonectomy surgery,  the whole of last year was recovery and multimodal treatment. The small tumor appeared after surgery has been stable ever since .He has been on Atomic clinical trial since October last year and things were going well until last week when we found out that he had small tumors in his only lung on the right side. We were told that he will need to make a decision whether to stay on this trial or join  CONFIRM trial. We know for sure that he was receiving medicine because the first 2 weeks in the trial he was having pain around where the tumour was which was the side effect but now I don't think its working. At 33yrs old we not even sure where he inhaled the evil dust. We are now planning to go for a private consultation fo advice before we go back to our hospital. I will keep you posted on this site and privately if you wish to exchange contact details. Good luck too.

Sorry, my message was in response to Jayne53 and all.

My husband was diagnosed last June at the age of 68.  Your husband is so young at 31, the disease doesn't usually show until much later in life.  I don't know much about the Atomic trial what does it involve.  Unfortunately the medical profession don't seem to have many answers to this type of cancer, hence all the trials.  We just wanted someone to tell us what to do but it seems that you have to make the decisions yourself which is tough.  Please let me know how you get on.  Take care.