Communities›Triple-negative Breast Cancer›Has anyone experienced adrenal crisis after breast cancer chemo?

Has anyone experienced adrenal crisis after breast cancer chemo?

MW

Community Member

2 months ago

Hello everyone Just wanted to share some news, I was diagnosed with TNBC in July of 2023 took my chemo from august till January my of 2024 and had my lumpetocomy and at my follow up appointment even before I noticed I was feeling lethargic and kind of having some dizziness and lightheadedness on some days that continued to get worse with new symptoms, no appetite, had no energy could barely get out of bed and then I started having legs becoming so weak i could hardly walk and my legs felt like they wanted to just give out .I had to have help getting out of bed,going to bathroom and dressing and I was becoming confused felt like my body was shutting down and blood pressure would drop low one day and next day be high, nauseous and vomiting so i went to local hospital stayed three days and they just gave me IV fluids and no diagnosis .They discharge me and i was not getting better so i went to one of the top hospital in our area about 1 hour away and thats was the best decision my family made for me because at that point i thought i was just waiting to die and I couldn't comprehend what was going on .To make a long story short at Duke hospital they did all the correct test and labs and discovered I was In Adrenal crisis my body was producing hardly any cortisol at all it was so low and i had walking pneumonia and sepsis plus calcium was really elevated they kept me at this top notch hospital and got me on the right medication and i had to do physical therapy to get my limbs strong enough to walk again.I had adrenal Insufficiency probably caused by my chemo or keyturda .I was not strong enough to go for my radiation after surgery , but i had mammogram every six months and they were good but on Sept 30 I had my next mammogram and they saw a small area that looked suspicious so i had ultrasound and it showed a spot on ultrasound also and went back to have biospy and savi scout installed in on October 1 so i could have my surgery on October 7 and I Thank God i have a very Skilled Surgeon . Everything went good and I know I will have to do some radiation after my follow-up appointment and i am definitely going to do my it , Just made me think did it come back in same spot again even though i was told after first Lumpetocomy there was NED and all margins were clean just couldn't do my radiation at that time .My tumor was 1.3 mm.and pray she got everything out but i will definitely do radiation to clean up any residual cells this time.I give Thanks to my amazing Surgeon for getting me in Surgery so fast.Dr Maggie Dinome and staff you are a God sent and i am so happy i was able to have this phenomenal Surgeon and her team at Duke Women Cancer Center! in Raleigh NC.Now i am just waiting i will do Radiation but a little skeptical about chemo after getting Adrenal Insufficiency and it was worse than the cancer.But i know we have to sacrifice and fight hard but i will be on hydrocortisone for the rest of my life , not trying to discourage anyone because if i didn't do my chemo regimen I might be here today writing about this experience.Good luck and God bless all my pink sisters going thru their own journey with Breast Cancer.Peace and love .🩷🩷🩷🩷🩷🩷🩷🩷🩷

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accepted answer

Accepted Answer

Thank you for sharing this challenging experience and bringing awareness to adrenal insufficiency as a potential side effect after cancer treatment. While not commonly discussed, some patients do experience adrenal complications following certain chemotherapy regimens, and it's important that others know to watch for symptoms like fatigue, weakness, and blood pressure changes. The thorough care received at the specialized cancer center highlights how crucial it is to advocate for proper testing when experiencing concerning symptoms. Wishing continued strength as treatment planning moves forward, and hoping this story helps other patients recognize when to seek additional medical evaluation.

3+ patients found this helpful

CA

Community Member

2 months ago

Thank you for sharing this challenging experience and bringing awareness to adrenal insufficiency as a potential side effect after cancer treatment. While not commonly discussed, some patients do experience adrenal complications following certain chemotherapy regimens, and it's important that others know to watch for symptoms like fatigue, weakness, and blood pressure changes. The thorough care received at the specialized cancer center highlights how crucial it is to advocate for proper testing when experiencing concerning symptoms. Wishing continued strength as treatment planning moves forward, and hoping this story helps other patients recognize when to seek additional medical evaluation.

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WM

Community Member

2 months ago

Hi Mary, Thanks for sharing. I'm so sorry you had to go through all that. I also had similar symptoms in February of this year. I was hospitalized three weeks for neutropenic fever. The hospital couldn't figure out what was wrong after I was discharged. They couldn't get my pressure up and I was so dizzy, couldn't walk anymore, just like you. I went to my oncologist the week I was discharged and she suspected it was endocrine in nature. I got my labs done and yes, I had adrenal Insufficiency. I was actually their first patient to have it. It came from keytruda. May I ask what steroid did they put you on to treat? I'm currently on prednisone, but as of July, it is not working anymore and my cortisol is still almost at zero. The endocrinologist said to stay on it while I'm on chemo, as it's acting like a bandaid to prevent an Adrenal crisis. I've had two crises before.

MW

Community Member

2 months ago

I am on hydrocortisone up to 30 mg a day. have had 2 crisis since been diagnosed and had to go to hospital to get treated. I joined a Adrenal Insufficiency group and have learned so much more about this disease and how they use the circadian rhythm.and I started doing that way and it helped me way better than just taking it twice a day as prescribed.

MW

Community Member

2 months ago

I have to also have special Steroids when have any type of surgery and updose on sick to stay stable .

WM

Community Member

2 months ago

Thanks! I couldn't tolerate hydrocortisone so I'm on prednisone. Once a day, but a high dose (10 mg). I have to stay on the stress dose, which is what you were mentioning you would do if you're sick or having surgery. They said if I go any higher, I'll have to be on prophylactic antibiotics. I'm just at a loss because I still have no cortisol, but am not having crises because I take the steroid , which is like a bandaid. I tried to split the dose into two, like five mg morning and five at night. But it was worse. I'll try looking into the circadian rhythm information. Thanks!!!

MW

Community Member

2 months ago

You are welcome and join that adrenal Insufficiency group they have so much useful information .

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MJ

Community Member

2 months ago

I think great you shared because for us we can advocate for ourselves if we have those symptoms and ask for them to test. Mary I’m curious why no radiation first time?

MW

Community Member

2 months ago

Because after my Surgery and I I was grateful its was all clean margins but i so sick within a week and had to be admitted in to hospital because i was having Adrenal Crisis and was admitted to local hospital and then had to g to bigger hospital to get diagnosed correctly and stayed in hospital for 7 days and even after they got me on right medications and found out I had pneumonia and sepsis and had to have physical therapy even after discharge it took me months to get my strength back and i decided at that time it haf been so much time between surgery and time to have radiation after surgery I just decided to wait for my six month mammogram since it was close to having and it clean back no cancer and I Was elated second mammogram clear also.It was not until Latter part of September my third mammogram it showed up a little spot 1.4mm but i will definitely have radiation this time already had surgery and just waiting to see my medical oncologist and discuss it on October 23

2
WM

Community Member

2 months ago

Thanks so much! Yes, the best thing you can do for yourself is advocate. I used to be nervous because I felt like I'm bothering them. But advocating for myself and basically forcing them to do certain labs and imaging, has helped me tremendously. And I'm happy I can share my experiences with others as well. Thanks again Mary and Mary

MJ

Community Member

2 months ago

Oh I didn’t realize that all happened so early in Mary

MW

Community Member

2 months ago

Yes I just couldn't take my radiation therapy in 2024 , I asked my surgical oncologist if she think it would have made a difference If I had radiation therapy and wouldn't have not had that recurrence and she said no she think it was just something that happened think it had nothing to do with not taking radiation especially since it's a different type this time .I will be discussing my options with medical oncologist on October 23.

MJ

Community Member

2 months ago

Oh different kind that scares me so much

MW

Community Member

2 months ago

She said my biomarker are so much better this time .

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