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