Immunotherapy

Welcome to the forums Eoin.  Glad to hear everything is going well with your treatment. I was rated borderline moderate to high risk of return after my kidney removal 8 weeks ago. I am struggling with decision on immunotherapy see my post and bio. As you are seven sessions in am interested in potential side effects as major ones are my concern. Hoping your treatment is a success going forward.

Hi

I've been on immunotherapy, ipilimumab and nivolumab for a stage 4 RCC (not post nephrectomy) and I had goood results.  The lung mets became undetectable and the primary kidney growth shrunk from 59 - 23mm.  After starting on it I felt so much better, less fatigued, more energy, more "normal".  The side effects I suffered was dry mouth, dry eyes, nasal congestion and impaired kidney function due to too great a reaction to the ipilimumab.  My kidney function is now like a 90 year old, but I don't feel any worse for it. 

You can read my blog here.

Hello Rustyfish and thanks for getting in touch. I suppose I should have mentioned that I’m male and am 65. I’m on pembrolizumab, still can’t pronounce it! Luckily, I’ve had none of the serious side effects like inflammation of the bowel, inflammation of the lungs or heart trouble. Yes, making the decision as to whether to have it or not was agonising. First, I said no, I’ll take my chances. Then I agonised again. I spoke to two really lovely nurse specialists and eventually decided to go ahead with the treatment. But it was a really difficult decision. I suppose what you’ve got to remember is that they are obliged to give you all the information on potential side effects to cover themselves legally. But that makes it all sound so much worse. I’ve had lots of side effects but they’re small and perfectly manageable, nothing serious at all. 

Hi Eoin

I'd like to add a couple of thoughts to the replies you've had so far.

My first thought was that most people seem to get side effects, if they are going to get them, with the first 3 or 4 sessions of immunotherapy. So if you have had 7 lots of treatment without any serious side effects, this is a good sign that your body can tolerate it well, and your immune system is behaving itself! Obviously, this is only what I've picked up from reading posts on here...I'm not a medic. The best people to talk with about this are your oncology team.

Many people have immunotherapy without having any side effects at all.

As yours was an aggressive cancer, the benefits of having immunotherapy as a precaution probably outweigh the risks. 

It is great news that it was found early and the surgery was successful!

I hope all continues to go well for you

best wishes

Candysmum