I was diagnosed in September 2025 at the Royal Marsden Sutton. Surgery was soon ruled out and I started CAPOX and pembrolizumab in October. CAPOX stopped after 3 cycles due to side effect but pemro continued for a further six cycles until kidney issues caused a pause in immunotherapy. The very good news is that the tumour cannot be seen any longer on a CT scan. It is not an ‘all clear’ but good news nevertheless. However my problem is extreme itching that started around cycle 4. It is a known side effect with pembro but nowhere did I read about the severity. Steroid cream is only partially effective and can only be used for short periods of time. E45 Itch Relief has little effect so for most of the time I am using 10% menthol which deadens the pain for a while. Some nights it is applied at 9pm, midnight and 2am before I fall asleep. It is difficult to describe the pain but the best I can do is it is like having red ants crawling over you body, mainly my back, followed by random coordinated mass stinging.
Has anyone suffered in this way, and if so have you found a solution?
Hello HaroldR
I am one of the community champions on the breast cancer pages and I noticed your post hadn’t had a response as yet. I don’t have the same cancer as you (I have metastatic triple negative breast cancer) but I was treated with pembrolizumab. I also had to stop treatment due to an immunotherapy related adverse event that damaged my kidneys along with a few other things. I hope your own kidneys are recovering. I needed 9 months of high dose steroids to resolve mine, but I got there in the end. Similarly, I got a full response as far as my cancer was concerned, and have remained in remission, despite having to stop treatment.
I did have issues with a rash too, but I don’t think mine was as severe as yours. I was able to calm it with a combination of oral antihistamines, topical steroid cream and topical emollient. Worth saying I also had to go on the high dose steroids (initially IV and then tablets) for the kidney issues, so that probably played a part. I made sure I avoided any form of fragranced product. Washing the areas just with water and using non bio washing powders on clothes and bedding (I didn’t use fabric conditioners anyway).
Unfortunately pembro has a long half life in your body. Good for the cancer but not so much for reducing the impact of the collateral damage it causes. I am now 3 years on from stopping pembro. I found everything that could recover gradually recovered over about 18 months. You probably don’t want to hear this might take a while, but hang on to the it does eventually get better part!
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I have metastatic Triple Negative Breast Cancer, in remission
