Plural mesothelioma - immunotherapy or chemo

My husband was diagnosed with plural mesothelioma last June.  He has never knowingly worked with asbestos but has enjoyed renovating houses over the years and we think this must have been where he came in contact.  He has had 6 rounds of chemo which he came through fairly well although it was quite brutal.  His scan in February showed no disease progression but the last one shows a deterioration.  He has been offered an immunotherapy trial and although we are keen to try immunotherapy are concerned about the possibility of him getting the placebo.  We have going private to ensure he gets the drugs and wondered if anyone out there has experience of immunotherapy to see if we should pursue this.  Any advice would be helpful.

  • A quick update.  My husband had a ct scan after three "possible" treatments of Nivolumab.  The scan results show a small improvement which we have found very encouraging as it must mean he is on the drug rather than the placebo.  It makes all the driving and endless appointments seem worthwhile now.  He is also feeling much better in himself which makes day to day life easier.  

  • Hi Jayne, thank you for the info. I am really happy for you and the good results, I think even knowing that you are on medicine is good enough for the mind. My partner will be testing his vitals next week and if all goes well he will be joining the trial nivolumab in 2 weeks. We visited a consultant and suggested to do a bap1 gene testing so that we know the type of tumour he has because apparently it is easier to treat once you know the type. He also suggested an injection you can receive that it is supposed to keep the tumours at bay if you could ask your oncologist about this. Our plan still stays if we don't see any improvement we will seek treatment abroad. Either USA or Amsterdam, I will keep you informed. 

    Good luck and stay positive. 

  • I've just started Confirm and have been assured that you are unblinded when you leave the trial for whatever reason, meaning you are told whether you were on the drug or not.

    You are not allowed to re-enter the trial and they will not give you the drug after the placebo fails, which some trials do ("crossover trials")

  • Thanks for that.  Hope you get some good results too.  Let us know how you get on.   Good luck.