Hi there
After a radical nephrectomy, I am due to start immunotherapy with Pembrolizumab. This is to mitigate the spread of kidney cancer through my lymph nodes. Does anyone have any experience with this treatment? I'd love to know what to expect. Many thanks. V.
Hi Vazquez and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and although I've had different cancer diagnoses to you I know how worrying starting a new treatment can be.
The online community is divided into different support groups so I'm going to recommend that you join the kidney cancer group as you'll then connect directly with others who have the same type of cancer as you and have been on pembrolizumab.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Vazquez
I don't have kidney cancer but I was treated with pembrolizumab for metastatic tnbc. The treatment protocol for my cancer was to combine it with paclitaxel or NAB-paclitaxel so I had chemo side effects that you won’t have.
I don’t know whether you have been given an explanation of how pembrolizumab works, but it’s worth understanding it as it helps explain why sometimes things go wrong when people are treated with this drug. It’s an immune checkpoint inhibitor used on tumours that express something called PD-L1. In normal life The PD-1 protein on our T cells binds to PD-L1 on critical organ cells to create immune privileged zones where essentially the immune system leaves the organ alone. Your cancer and my cancer are mimicking that method in order to hide from the immune system. It’s like our cancers wear an invisibility cloak that stops the immune system destroying damaged cells.
Pembrolizumab breaks this binding so the immune system can ‘see’ and take action on the tumour. Whilst it doesn’t work for everyone, it can work extremely well. In my case it put my cancer into complete remission and I have remained NED for over 2 years.
The downside is the immune system might also damage normal cells. The vast list of side effects in the literature are these sorts of things, ranging from things that are easy to fix, like skin rashes, to actual organ damage. They come on quite suddenly - my oncologist told me you will have no side effects from pembro unless and until one day you become suddenly very ill. That’s what happened - it caused an acute kidney injury, took out my thyroid, and damaged my lungs. I needed 9 months of high dose steroids to resolve these things and had to stop treatment. Fortunately, as mentioned above, it had done enough.
I have absolutely no regrets from trying this treatment - if I hadn’t, I don’t think I would be here to reply to you today.
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