Diabetes and immunotherapy

[Hendon1958]

Has anyone been diagnosed with diabetes while having immunotherapy?

[Denzie Moderator Volunteer]

This is a known side effect but I don't know if it's common. The first person I know of this happening to was on one of the clinical trials. Her doctor gave her metformin to maintain normal levels.

What has your doctor said about it. Have they discussed your options?

[Hendon1958 in reply to Denzie]

Doctors have put me on insulin , I have seen 2 specialist neither I feel have had a lot of experience of dealing with my condition. I have had blood test which say I have no diabetic anti bodies. (Does that mean I am not type1) . The reason I think I am on insulin is because I have hypo’s and hyper’s. One of the doctors suggested I was insulin intolerant and had brittle diabetes. I am on a constant roller coaster and am worried what this is doing to my other organs.I think I need to go on a Daphne course to learn how much insulin I need. I also need to know my carb to insulin ratio but 2 months in from diagnosis don’t know that.

Should I suggest I go on metformin? Does anyone know of a specialist that has researched this will go anywhere in the uk to be treated I am now that desperate.

[Denzie Moderator Volunteer in reply to Hendon1958]

Perhaps someone at the Roy Castle Foundation can recommend someone. The person I mentioned having it was in a clinical trial so she was monitored closely. If this was my body I would ask for a referral to an endocrinologist.

This isn't much help I know but I really don't know much about diabetes.

[Hendon1958]

Thanks for replying, I have and am still under 2 specialist neither I fear have researched or read about the problems I am facing. One is nhs and the other private. As immunotherapy is reasonably new a lot needs to learnt on the side effects. I have had many and at the moment not in the position to stop it . Many thanks again if anyone is going through this I would much appreciate and message.

[Miranda_GO2 Partner]

Hi Hendon, were you also on steroids with the immunotherapy?

[Miranda_GO2 Partner in reply to Miranda_GO2]

also, which immunotherapy were you taking?

[Hendon1958 in reply to Miranda_GO2]

Not on steroids

[Hendon1958]

I am on KEYTRUDA

[Miranda_GO2 Partner]

Denise's suggestions of Roy Castle and follow up with specialist sound spot on to me. Sometimes diabetes can occur during treatments and then doctor work to manage the diabetes. For general (no cancer treatment specific) diabetes education, I found this resource: diabetes.org.uk/guide-to-di...

Maybe others will chime in with their experience with diabetes and immunotherapy as well.

[Hotrod65]

5 yrs on Pembrilizimab, 50 infusions for MPC 4, treatment emergent Hypoglycemia but not diabetes...YET

[Hendon1958]

Been on it for 10 months think I am unlucky, it’s also effecting my thyroid. In uk they only treat with this drug for 2 years . Where are you?