Not sure where to go next

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My husband was diagnosed with Mesothelioma in June 2018.  He had six rounds of chemo which was horrible.  He showed a very slight improvement after 3 rounds and then stable after 6 which continued until May 2019 when it showed disease progression.  After a lot of investigation and discussion he eventually chose to go on the Confirm trial for immunotherapy which he started in July 2018.  He has felt really well since then with much more energy and no side effects.  The plural fluid has now dried up after nearly 18 months.  The consultant was convinced that he was on the drug not the placebo and they were impressed with his clinical response.  However two weeks ago, just prior to a treatment, he was called by the consultant to say that the people organising his trial had looked at a scan done 3 months ago, and decided because there was a small increase in the meso that he should be taken off the trial.  We feel it is strange that it took 3 months to come to this conclusion and this has tied in with the start of Coronavirus .  We do not seem to be the only ones whose treatment has suddenly stopped.  I understand that the NHS are under pressure but does this mean that anyone with a terminal illness is being denied treatment.  He has supposedly been handed back to the original hospital where he was being treated but not sure if we have to just wait for them to contact us.  Maybe they are hoping he will just keep quiet!

  • Hello,

    On what immunotherapy  was your husband?

    My mother is on Opdivo and has been stable since december, they still continue the immunotherapy  every 2 weeks also with the corona virus.

  • Hello

    He was on Nivolumab.  Glad to hear that your mother is stable and they are continuing with her treatment.  We just thought it strange that they made a decision 3 months after his last ct scan.  I have heard rumours that cancer treatment is being moved to private hospitals so this may be where we have to look.

  • Hi, great news that your mother is stable at present.  I hope that continues. Can I ask please how she got on the Opdivo, was it through a trial? My dad has had 4 rounds of chemo with no growth but has now been told that there is no further treatment available. 

  • In Belgium its a trial sponsor by Bristol-Myers Squibb . 

    She can have it up to 2 years as long it works, your really should inform into this because my mother is really feeling good for the moment, she is leading a normal life. 

  • FormerMember
    FormerMember in reply to matw

    i think these trials have closed now.  The confirm trial using immunotherapy has closed.

  • FormerMember
    FormerMember in reply to FormerMember

    I mean they are closed to new patients not people already on trial

  • We would like to know what the guidelines for these trials are.  It seems that they are only interested in positive results with regards to the growth of the cancer, rather than quality of life while taking the treatment.  We would like to pursue the idea of paying for the drug but it is difficult to find out anything atm with the virus taking all resources.

  • FormerMember
    FormerMember in reply to Jayne53

    Mesothelioma uk, the charity have lots of info on their site and a trial information sheet, they are always there to speak too as well if you haven’t been on the site already

  • Thanks yes, I know about them and donate every month.

  • FormerMember
    FormerMember

    Hi Jayne, I think we communicated before. Your text above just described everything we went through with my husband. We were lucky that he started treatment a week before lockdown, he is receiving a combination of immunotherapy from a private hospital. We have a nurse who comes home and treat my husband every 3 weeks. Since I am not allowed to recommend anything on here, if there is another way to contact each other I am happy to exchange information. I hope we find a solution to this and stay optimistic.