Coming off Pembrolizumab because of severe side effects

Hi Rafe 

I am not a member of this forum as I have a different cancer, but as one of the community champions on the breast cancer pages, I do look out for new posts referencing pembrolizumab as I was treated with it. I also had a severe adverse reaction after about 6 infusions. My issues were an acute kidney injury/ nephritis, loss of thyroid function and pneumonitis. I needed 9 months of steroids (initially very high dose) to stabilise my issues, and had to stop treatment. At the time I was devastated by this as it felt like my lifeline had been removed. My treatment had been for metastatic tnbc with liver mets. I had a scan just after the issues occurred and was delighted to find a very significant reduction in my mets. I expected them to grow back but another scan some months later showed they remained stable and were perhaps just scar tissue. I had them ablated and so far have remained in stable remission. The adverse event was in Sept 23 and the ablation in Feb 24 so I am hoping I have a long term response to this. 

When it all happened I did do a lot of digging around into the research and found a fair amount of evidence to suggest that people who have to stop treatment because of these sorts of issues don’t typically have a worse outcome than people who can stay on it. My assumption is that we get the issues because our immune system has been fully enabled by the drug to attack things previously hiding behind the PD-1/PD-L1 bind that the drug has taken down. So logically we should also get a good response on our cancer. The drug also has quite a long half life so I understand it keeps working for some time after you stop treatment. 

I hope my experience is helpful.

Many thanks for your reply. It’s all a bit unknown which doesn’t help but it’s useful to have your input.

Aveeno cream for your skin worked wonders for me They stopped both EV and Pembro for me after skin toxicity had a scan no evidence of disease scan again in 2 months just had results no evidence of disease again so they've added another month on next scan in 3 months I did mention to oncologist a pain in my right hand side just under rib cage but he's adamant if anything was there it would have showed up on scans good luck try and stay positive 

Many thanks for your comments. I wish you the best going forward. I will have another scan in November so can compare against the previous one in August. Fingers crossed that it will at least be no worse than before. Keeps me awake worrying about it which doesn’t help but I’m working on trying to limit the sleep loss as much as possible.

look after yourself 

So pleased EV has worked for you, had such high hopes for this treatment but unfortunately after 12 sessions it has not helped, tumour still growing. Disappointing outcome but pleased it has worked for you.