I have had two injections of Pembrolizumab since discontinuing AVD after five infusions. Generally I feel better than I did with chemotherapy but the side effects seem to be less predictable: I've had back ache,sciatica-like pain, swollen gums,enlarged lymph nodes in my neck...all on topof the residual chemo/lymphoma symptoms. My consultant didn't seem concerned but I feel anxious because I don't know what is normaland what could be serious. Is anyone else on immunotherapy?
Hi Lari
I am not a member of this forum as I don’t have Hodgkin’s lymphoma. I am one of the community champions on the various breast cancer forums. I do keep a look out for posts involving Pembrolizumab as I was treated with it, and I am not aware of there being other community champions with this experience.
You are right that immunotherapy side effects don’t fall into a predictable pattern in the way that chemotherapy side effects do. You may already understand pembrolizumab’s mechanism of action, but if you don’t, the below might help.
Pembrolizumab is a PD-1 inhibitor. Some of the cells on critical organs in our body have the protein PD-L1 in them. This binds with PD-1 on the immune system’s T cells to create immune privileged zones to stop the immune system interfering. In normal circumstances this would protect the endocrine system, the kidneys, reproductive organs etc from excessive interference. Your cancer (and my cancer) has tested positive for PD-L1 and is using this same method to hide away from the immune system. Like an invisibility cloak. So the idea behind pembrolizumab is to block PD-1 so the immune system can ‘see’ the cancer and hopefully destroy it. Of course the drug is working systemically to block PD-1 everywhere, which can mean the immune system gets over excited about things it would normally leave alone.
When this happens it’s called an immunotherapy related adverse event. They are graded according to severity and usually need treatment with steroids. If serious enough, treatment is halted until the symptoms improve, and if even more serious, treatment is stopped. These things usually come on quite suddenly - you are ok and then you are not
It’s therefore important to report any sudden changes to your 24 hour helpline because if you do develop a problem, speedy treatment with steroids is important. At the moment your consultant isn’t concerned with the things you are reporting, and as you say, you are still recovering from the previous treatment.
I had a grade 3 event (acute kidney injury) which meant I had to stop treatment. It happened after the 6th infusion. I needed 9 months of steroid treatment to recover. However, it also put my cancer into remission despite my cancer being metastatic and that remission has held since stopping treatment in 2023.
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I have metastatic Triple Negative Breast Cancer, in remission
