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TNBC Survivors with adrenal insufficiency

Breast Cancer | Last Active: Feb 16 11:15am | Replies (10)

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I am a Stage2A ER+ breast cancer ... survivor, knock on wood, because of the size of the tumor. I had AC chemo neo-adjunctive. Keytruda was added on the second infusion and the third. Then I went into a coma on the bathroom floor. DKA with coma. Luckily my neighbor checked on me morning and night. I had become a Type 1 Diabetic from Keytruda. I had normal A1Cs prior. I struggled with managing it. I reported what I did and what happened with my blood glucose. I got looks seeming to say they thought I was lying. My BG was supposed to go down with walks. Mine went up. I struggled to eat. I struggled to think. I didn't feel like myself. I chalked it up to being in chemotherapy. I went on to the taxol infusions. I also never recovered my sense of balance. I had surgery. Started radiation. Two days in I felt I wouldn't make another day. (Unspoken that means I might die.) I had progressively had trouble to keep going. Lost lots of weight, slept 12 hours and a nap every day. Didn't walk or stand except to go to the bathroom and treatment. It hurt my stomach to drink water. Going down stairs I would just drop the last half of an inch. My sister and onco told me I looked very white. I had trouble walking. At this point my sisters were taking turns coming to take care of me. And by chance my primary had an open appt the next day. I couldn't really describe what I was feeling or symptoms. I just felt bad. I thought maybe I was dehydrated and had taken my BP seated, lying down, and standing. So my primary repeated these. She couldn't detect my diastolic, is that the second one? while I was seated. She paused, laid me down, and called the Emergency Response Team. I was hospitalized. Turns out I had Secondary Adrenal Insufficiency. Took days to diagnose. No Endo came. That's another story. The hospitalist diagnosed it. Finally endo came and said I am rare, rare, rare. I am tired of hearing "rare". That the secondary AI happened at the same time as the coma (6 month prior) from the Keytruda. Also no hope of recovery. I take 10mg in morning, 5 in the evening. As soon as I started taking hydrocortisone I felt like myself again. First time since the coma. And my sense of balance came back. I was able to speak in sentences and maintain a cohesive train of thought. The reason I found this forum is that I don't feel energy. I've been through post-cancer fatigue therapies. For about 10 months. Some times my muscles just hurt as if I've been used them, for no reason. My Oncologist asked me if I feel energy regarding the AI, and later I thought maybe that is what's going on. I am ... happy?, no relieved?, validated to see there is a community out there. Not alone. I changed endos and now go to the one at MD Anderson. I see her next week. I will ask about this. I am trying to work again. I'm having trouble with having enough energy to do so. As a part of the post-cancer fatigue therapies at MD Anderson's Integrative Medicine department I've started Pilates twice a week (as my strength training requirement.) I am getting stronger, but even there I feel a lack of energy in my muscles. I remember how it used to be. I thought I must not be eating well enough, but perhaps it is Sec. AI. Thank you.

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Replies to "I am a Stage2A ER+ breast cancer ... survivor, knock on wood, because of the size..."

@rosback

I empathize with you regarding breast cancer (I am a TNBC survivor) and the secondary adrenal insufficiency from Keytruda. You'll see some previous posts from me. Once you feel as if you've been raised from the dead and have a trusted endocrinologist, consider counseling if you haven't already. Having unrecognized adrenal insufficiency is traumatic (I had two near death experiences because of AI--cancer took a back seat for awhile). If you are still having muscle fatigue (I'm also a Doctor of Physical Therapy and an Orthopedic Specialist--able to work), talk to your endo about possibly increasing your hydrocortisone dosage. One day at a time--keep moving. Best of health to you. Becky