My husband has mesothelioma and has been having immunotherapy (Ipilimumab and Nivolumab) every 3 weeks since early January this year. All was going well until last week when he had a severe reaction - diabetic ketoacidosis - and has been in hospital for a week while they try to stabilise his blood sugar levels. They plan to re-start the immunotherapy in 2 weeks time.
This is supposedly very rare so I'm posting in hope rather than expectation that anyone else has had the same thing happen, whether their immunotherapy was re-started, and whether they were left with Type 1 diabetes as their rampaging T-cells had wiped out the insulin producing cells in their pancreas. None of the health professionals involved seem to be able to give us a straight answer as to whether he will now be on insulin for what remains of his life.
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toffeepudding
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Hi just wondered if you know there is also a maesothilioma U.K. charity, it might also be worth checking their website. Hope your husband is better soon x
Yes, I've looked at that. Immunotherapy was only licensed for treating mesothelioma in August 2022 so the chances of someone else with a relatively uncommon cancer having what is a very rare (around 1 per cent of immunotherapy patients) side effect is remote. Even Macmillan don't know much about it. But the treatment is also used to treat other lung cancers and melanoma among other things so my question is more about the adverse effect of the therapy or how it interacts with diabetes rather than anything specific to mesothelioma. Thanks loads for your good wishes and taking the time to respond though.
I am sorry to hear about your husband’s diagnosis of mesothelioma, these immunotherapy treatments are still very new and for the vast majority of people they are tolerated very well with little side effects. Unfortunately, some people can go on to develop more serious reactions, traditional platinum based chemotherapy drugs have been widely used since the 1960s and reactions from them are well documented as there is years of data that can be recalled and studied. With the rarer side effects of immunotherapy there is less data as less patients have experienced them, this makes it much harder to predict how they will respond and what outcome to expect. Below I have added a link to an article that I have found which might be of interest to you.
If you would like to discuss anything further you can email ask the nurse at lungcancerhelp@roycastle.org or call the nurse on our free phone helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
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Treatment withdrawn, do we have any more options? 
1sr Appointment with Oncologist
Immunotherapy Side Effect 
Survival stats and how to take them.
