TNBC Survivors with adrenal insufficiency

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)

I also have been diagnosed with Secondary Adrenal Insufficiency due to TNBC treatment from Feb-Aug 2023. I received Keytruda also. My endocrinologist believes mine is due to the high dosage of steroids I received. There has been little to no improvement in the Bloodwork. My Doctor believes my adrenal gland can wake up. I am currently on 10 mg of Hydrocortisone in the morning and 5 mg 4 hours later. I have found I feel worse if I eat sweets. The exhaustion is the worst especially not knowing when it will appear.

I'm so sorry for your situation. My adrenal insufficiency is due to Keytruda attacking the part of my pituitary gland in my brain that controls the adrenal glands. For some reason this problem seems to be particular to women being treated for TNBC. My MD says "sorry--it's not coming back." I see Afreen Idris Shariff, MD at Duke Medical in NC. She is an endocrinologist whose entire practice is based on evaluating and treating people harmed by cancer treatment (Keytruda immunotherapy). Taking life-saving hydrocortisone for adrenal insufficiency is like walking a tight-rope. It's difficult to find a balance in taking too much or not enough. I now take 12.5mg of hydrocortisone at 7:30AM and 5mg about 4:30PM. I had months of terrible gut pain at night when I was taking my second dose early afternoon. Thankfully it made a big difference moving the timing of the second dose back a bit.

Funny, my oncologist told me that aquiring AIs was very rare. I'm finding that's not true. TNBC, neoadjuvant chemo and immunotherapy, got extremely ill so oncologist dropped my doxorubicin and continued my Keytruda. Got more I'll until labs showed I have secondary adrenal Insufficiency and hypothyroidism. Got medication, had masectomy, got sepsis, lost weight and ta da. Now I'm having all over aches in legs and knee pain plus dry eyes and mouth, cluster heaches and mild hallucinations in dark rooms. Went to ER for new warm redness on my unresolved seromas on ribs, below incisions and smart doctor loaded me with antibiotics to avoid more sepsis. So, do you think it's a rough patch or beginning of a third AI disease There's no one doctor that wants to dive in for me. I'm a happy person..but also like to move forward as to avoid future complications.
Anyone like me out there?

nicolesj,

I am so sorry for what you are experiencing. The adverse effects of my TNBC immunotherapy treatment have been huge. In addition to ongoing secondary adrenal insufficiency, I have severely dry eyes and months of severe styes--it was a mystery to multiple MDs/ophthamologists--but I did find some case studies out of Hungary and one associated with University of Michigan about women who had been on Keytruda and had meibomian gland dysfunction after stopping Keytruda--the researchers concluded it was likely Keytruda related. See my comment before yours--I had to find a niche endocrinologist at a major medical center (Duke) to get some answers. I had to travel for my first visit; now my visits are virtual. Clearly your body had a robust reaction to the immunotherapy. When our immune systems over-react, the body fights itself and this can cause a host of problems. Keep advocating for yourself. I hope that your sepsis and the seromas fully resolve soon. One day at a time.

I also had TNBC, but have not had to take Keytruda. However, I had an ordeal with a persistent seroma. My surgeon kept draining it with a syringe over and over and it kept coming back. Finally, I sought out another Dr and had a drain installed with drain bottles attached for about 10 days. It worked and has not come back.

Keep advocating for yourself… 100 times over and again. The squeaky wheel gets the grease is a fact… especially with tnbc. If I hadn’t squeaked really bad, my diagnosis and treatment would’ve been a bigger challenge….I’m a 2a tnbc club member, bilateral mastectomy with saline implants at surgery. Jan 23rd 2025. Drains on each side for 3 weeks.. and an incision infection that caused another surgery for descaling and cleaning… ended up healing without taking my implant out.
Chemo lowers healing for mastectomy… with or without implants. Started dose dense chemo treatment march 10th and just finished 4th taxol of 12 weekly, then will do doxorubicin and cyclophosphamide biweekly x4. I’m doing pretty good now. I lay low and keep focused on my needs. We are fighting for our lives. Screw everything else. EAT FIGHTING FOODS.

With AI, I read it causes stress and immflamation. Food like quinoa, chia seeds, hemp hearts… check out ginger… I drink homemade tea all day long. You may need to adapt to liking it. Add other tea with it… no caffeine .
Do your research until you’re comfortable that you’ve done all you can. And then do more. And no benzodiazepines if possible…
Tnbc responds to nutrients and drugs differently than positive breast cancer drugs. Not sure why your doc dropped the doxorubicin and kept keytruda… I’d rather blame keytruda and go with gold standard. This beats a body up either. Keytruda is not tried and true… just sayin’.
Be strong, be brave, be beautiful..
I know you are sister…
Peace

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.

May you find the strength you need. You have been through the worst that life can give you and made it this far. Keep advocating for yourself.

@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