TNBC Survivors with adrenal insufficiency

Posted by beckytnbc @beckytnbc, Oct 5 6:36pm

I have adrenal insufficiency (AI) as a result of treatment with Keytruda/pembrolizumab during the neoadjuvant phase of chemo/immunotherapy for triple negative breast cancer (TNBC). The AI almost took my life twice--first when it was unrecognized and a couple months later when I got a norovirus. My blood cortisol levels were not monitored during the Keytruda treatment. I am grateful to be alive. However, I am finding the adrenal insufficiency challenging to manage as a super active person. The medical profession is minimally familiar with this condition and it is a lonely diagnosis. I am searching for a support group particular to this diagnosis.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

krisrwalters | @krisrwalters | Oct 6 10:22am

Hello Becky tnbc

I have adrenal Insufficiency due to chronic steroid therapy and years of intractable pain. Yes, it IS hard to manage, esp with your active lifestyle. It was, and is, mostly trial and error. I work with an endocrine NP whom I trust and she has me on 30 mg when I get up and around in the morning, and 10 mg around 4 PM. When my body is stressed for whatever reason, I will sometimes add another 10 mg 4 hours later. My best advice would be to search for an endocrine provider whom you trust, often NP's that do bioidentical hormone therapy will also specialize in other hormones, like cortisol, as well. Best of luck on your journey and best wishes as well!(ps I know there are Facebook groups for adrenal insufficiency)