First time posting on this forum. Here goes…
Having been diagnosed with TNBC in April 2024, I underwent chemotherapy (with cold cap) immunotherapy, lumpectomy, (1) lymph node removal, radiotherapy and later, Zolendronic acid every 6 months for 3 years. I had a PICC line fitted in my arm early on, in an attempt to reduce my fear of needles.
Approximately 1 year after chemo and immunotherapy treatment began I developed Pruitis, a form of persistent itching on the trunk of my body. No matter how hard I tried, I could not break the itch/scratch cycle. I developed scabs where I had scratched my body, which then bled and became painful, particularly when showering. Long story short, I had to go to a private consultant where I had a biopsy, to ascertain that it was indeed the immunotherapy that was causing the extraordinary itching.
I have now had several courses of steroid treatment and creams/ointments in an attempt to reduce the inflammation and each time, the itching disappears and then returns with a vengeance. I have now also been referred to the Toxicology dept at my local hospital. Light therapy treatment has been suggested as a possible treatment, which I will commence in June.
I appreciate very much all of my treatment but I also realise that Immunotherapy is a relatively new drug and we’re still learning.
Other possible side effects to note? (1) Neuropathy in my feet and hands, (2) new pain in my joints, (3) unusual (for me) nose bleeds, (4) hay fever symptoms (also unusual for me.)
I can’t be the only one to have this, can I ????? I am wondering if anyone with similar, has found a magic treatment? Please share if so !
I am sorry you are suffering some after effects from immunotherapy treatment. I assume this was pembrolizumab? I had pembrolizumab for metastatic tnbc and started to develop issues about 5 months into treatment. I did have a rash for a while, but it settled with a combination of steroid cream, antihistamines and hospital grade emollient. More of an issue was an acute kidney injury, loss of thyroid function, and pneumonitis. I needed 9 months of tapering high dose steroids to save my kidneys, and picked up another bag of long term issues from the steroids. These included increase in arthritis symptoms. Meanwhile the NAB-paclitaxel caused peripheral neuropathy.
it’s my understanding that pembro has a long half life so you can develop new issues for up to 2 years after stopping treatment.
So lots of sympathy but unfortunately no magic treatment for your particular set of complications. I found steroids had to be weaned exceedingly slowly or symptoms would return, hence why it took 9 months to get off them altogether.
I would hope the immunotherapy has done what it’s meant to do on your cancer. As well as the pile of issues it gave me, pembrolizumab also has given me a sustained remission so I credit it with saving my life.
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
