Melanoma & immunotherapy: Dealing with adrenal insufficiency?

Posted by bythesee5 @bythesee5, 9 hours ago

I have metastatic melanoma that was treated with double immunotherapy. I ended up with secondary adrenal insufficiency that rules my life and I have little to no input by doctors. I take 10 mg in the morning, 5 mg at lunch, and 5 mg in the evening. I feel tired all the time and can't to sports anymore. I barely manage walking each day. The hydrocortisone put 12 pounds on me and now I'm trying low dose Wegovy oral to see if it will counteract the steroid weight gain. I've been dealing with checkpoint inhibitor side effects for a year now and just wish I felt like someone in the medical community was helping me.

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Colleen Young, Connect Director | @colleenyoung | 7 hours ago

@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?

Susan, Volunteer Mentor | @grammato3 | 6 hours ago

In reply to @colleenyoung "@bythesee5, welcome. I pulled your comment into a discussion of its own in the Melanoma &..." + (show)

@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?

bythesee5 | @bythesee5 | 6 hours ago

In reply to @colleenyoung "@bythesee5, welcome. I pulled your comment into a discussion of its own in the Melanoma &..." + (show)

@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.

bythesee5 | @bythesee5 | 5 hours ago

In reply to @grammato3 "@bythesee5 and thank you, colleenyoung, for bringing the comment to this discussion group. As one who..." + (show)

@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.