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!
Just thought I'd pop in and say that you don't have to befriend each other to swop information. In fact the whole idea of the community is to freely swop information and experiences and to support each other in an open forum. This is so that new people joining the community can quickly find the information and help that they need.
Obviously if you feel something is very sensitive and you don't want to share it with others that's different.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
