Hi all,
For context, diagnosed with triple negative breast cancer and I have one affected lymph node.
I currently undergoing on my second phase of chemotherapy (EC) after completing phase one (taxol and carbo). I have been having immunotherapy (pembrolizumab) throughout, since November.
My oncologist called me today to inform me that my cortisol has been low on my most recent two blood tests and that my adrenal gland has been damaged by the immunotherapy. He explained that I would need to take hydrocortisone indefinitely to avoid becoming extremely fatigued and very ill when picking up colds etc.
I am so disappointed and fed up with the news. The steroids I have been taking alongside my EC chemo make me feel rotten and I am so relieved when I can stop taking them (after three days). I have a lot more questions for the oncologist e.g. does the adrenal gland start to repair and the dose can be lowered etc.
I am wondering whether anyone else has experienced this diagnosis or has been on hydrocortisone long term?
Thanks.
Hello Hannah (hannnah)
I am Brian, one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered.
Are you aware we have a "Triple Negative Breast Cancer Group" and it might be an idea to join that group and copy and paste your post in that group too. Here's the link you need:
Triple negative breast cancer forum
I wish you well and hope that you get the information you are looking for.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi hannnah
I have metastatic TNBC and also had complications from Pembrolizumab. In my case I had an acute kidney injury leading to nephritis, lost thyroid function and my lungs developed areas of pneumonitis. I spent several days in hospital and moved through high dose IV steroids to 60mg of prednisolone a day. I was able to gradually reduce the steroids but it took 9 months to get off them completely. My kidneys gradually recovered and my lungs also improved. I take levothyroxine for life as my thyroid won’t repair. It’s tough when you get serious adverse effects. I was both extremely ill for a while, and also finding the steroids difficult in terms of them making me jittery, stopping me sleeping, destroying my sense of taste. The good thing to come out of it was that it put my cancer in remission.
I don’t know whether adrenal glands repair. I was told at the beginning that my thyroid would not repair and my kidneys would possibly improve but I wouldn’t get normal function back. As it happened, my readings did get back into normal range, although they are probably not as good as they were.
If you are interested in my journey through this, if you click on my name you will find a bit more information, and at the bottom there’s a link to my blog. My immunotherapy issue happened in September 23.
Wishing you all the best.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
