Hi - my first time posting.
I was diagnosed with pleural mesothelioma in November 2023. I was lucky and didn’t need treatment just CT scans every 3-4 months. In September 2025 I was started on immunotherapy. This helped reduce my small tumours but unfortunately I got really bad side effects very quickly, the worst of these being immunotherapy induced colitis in November 2025. I was prescribed Prednisolone steroids. The side effects of this was even worse! I still have the colitis but it’s so much better and I’m no longer on Prednisolone. Unfortunately I can’t get rid of or relief from side effects. I’m not even sure what’s actually causing them. The worst is itchiness (no real rash). My lower legs and feet in particular get very red, swollen and sore.
I’m looking for advice to help with these side effects. I’ve used various creams including Zerobase but only get very limited relief. I’ve also been prescribed strong antihistamines. Does anybody have any suggestions please?
I’ve been told I cannot go back on immunotherapy because of the side effects. Makes sense as it was causing more problems than the disease! Even though I haven’t had immunotherapy since Christmas my mesothelioma is still stable but that won’t last forever. My only option then will be chemotherapy which kind of scares me.
in the meantime it would be great if someone had any advice to help my side effects. Thank you
Hi Mitzijaz
Welcome to MacMillan. I am sorry you are having immunotherapy related issues. I don’t have mesothelioma but I am one of the community champions on the various breast cancer forums. I was treated with immunotherapy (Pembrolizumab) for metastatic triple negative breast cancer. I also had a host of immunotherapy complications and had to take prednisolone for 9 months to resolve my issues. My primary issues were an acute kidney injury causing nephritis, loss of my thyroid and pneumonias, but I also had inflammatory bowel issues for some time and also skin rashes. The latter was treated with a steroid cream, emollients and antihistamines but doesn’t sound as long lasting as yours. These types of drug remain in your system for a long time so problems can continue. My oncologist told me you can get immunotherapy related problems for up to two years after stopping treatment. The good news is it can also have a long lasting effect on the cancer. It’s now almost 3 years since my immunotherapy related adverse event, which meant I also had to stop treatment, and I remain in remission. I think all you can do is keep pressing your oncology team for more help with your issues.
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I have metastatic Triple Negative Breast Cancer, in remission
