Melanoma & immunotherapy: Dealing with adrenal insufficiency?

@bythesee5, welcome. I pulled your comment into a discussion of its own in the Melanoma & Skin Cancer Support Group.

@jake072 @grammato3 and others can share their experiences about how they manage the unwanted side effects of treatment such as adrenal insufficiency, checkpoint inhibitor side effects, weight gain, mobility, etc. See this related post https://connect.mayoclinic.org/comment/1526299/

How are you doing on Wegovy so far?

@bythesee5 and thank you, colleenyoung, for bringing the comment to this discussion group. As one who has treated with a checkpoint inhibitor immunotherapy for metastatic melanoma, you are correct that I've also encountered adverse effects although mine resulted in colitis and loss of weight which - as a sigmoidoscopy confirmed yesterday - has been temporary in nature due to the treatment I've received for that with the assistance of a GI specialist - but it's taken over 8 months to achieve that stability. Adrenal insufficiency is generally more complex to manage.

@bythesee5: how long have you been having these symptoms and do you remain on immunotherapy? Have you been working with both your oncologist and an endocrinologist to determine the most appropriate dosing of the hydrocortisone especially in conjunction wit h the Wegovy?

@colleenyoung I've only been on oral Wegovy lowest dosage for a week. So far no weight loss and a little nausea for a couple hours near mid day. I'm planning to keep on it for 30 days to see if there are any weight loss results. My oncologist encouraged me to try it but didn't have high hopes for the weight loss. At best, he thought I might lose 3 or 4 pounds. Has anyone else tried ways to lose the weight caused by permanent steroid use? Also anyone using hydrocortisone daily for permanent AI do you ever get energy from it? I hear this from doctors like we're supposed to feel good, pretty normal, and I never feel that way. I've heard others say that getting the dosing right is like tightrope walking and maybe I need to be taking more? But that makes me worry about more weight gain and type ll diabetes.

@grammato3 I've been off immunotherapy for a year. Been through colitis, skin rash, AI, and now lymphoedema and nerve problems in my legs. The skin rash has taken a full year to clear up, the colitis took about 6 months, the AI is permanent. I'm currently NED. So I'm off most doctor's radars. I have a new local endocrinologist and this is way over her head. My cancer connected endocrinologist department is hard to reach and distant regarding care.

@bythesee5: You have truly been through the wringer with adverse effects. Looking on the bright side here is that individuals who have these tend to remain NED longer with increased survival rates. I know that may sound like a trade-off when you feel miserable from the effects you've had as result of the immunotherapy. May I ask what immunotherapy protocol you had been on and how long the treatment had been before these ir-AEs (immune-related adverse effects) occured?

This can be a complicated issue, however many endocrinologists are knowledgeable in and equipped to handle andrenal insufficiency, although some may tend to focus on other issues such as diabetes or thyroid concerns. Can you explain more about the "cancer connected endocrinologist" and what you mean by their being distand regarding care? For instance, is this specialty on staff at the facility where you treated for the melanoma? If so, can your oncologist intervene to assist with prioritizing your concerns? Which medical professional is providing oversight of your Wegovy?

It's definitely a lot to try to handle on your own and requires medical managment. If you feel you could benefit from greater intervention, would it be difficult to establish care with another recommended endocrinologist in your area who has experience in adrenal insufficiency?

I too have secondary permanent AI from immunotherapy (Keytruda) but for treatment of triple negative breast cancer. I don’t know if you saw my initial post which is on the Mayo breast cancer section. It is a frustrating condition—very much like a tight rope. I’m very active. I typically take 15mg hydrocortisone at 7:AM (consistent time and always with protein-egg); 2.5mg at noon; 5mg around 4:30PM. I dose extra with added life stress or exceptional physical exertion. Having a regular schedule helps tremendously. I’ve been dealing with it for a couple years and am getting better at it. The weight gain is maddening—reaching for food when I’m tired is a challenge—I need cortisol, not calories but my body is programmed to reach for food. The AI has also eliminated feelings of satiety for me—this was never a problem before AI. One day at a time and find an endocrinologist who is very familiar with this—many are not.