One year in on Immunotherapy

I have a different cancer (tnbc) and was treated with a different immunotherapy drug (Pembrolizumab) which is of the same class as Nivolumab. Unfortunately immunotherapy adverse events can happen with these drug classes, because they are PD-1 inhibitors. Your cancer is exploiting the body’s natural mechanism to hide from the immune system. The drug reveals the cancer to the immune system, but also exposes critical organs to the immune system. So you don’t build tolerance to the drug but can experience new consequences at any time. The literature will tell you some of these are rare. 

I suffered an acute kidney injury, lost thyroid function, and experienced pneumonitis. I also had skin rashes, ongoing issues with excess wind, inflammation in my joints. I had to stop treatment. I did find at least one research paper that correlated immunotherapy adverse events with good response in terms of the cancer. Correlation isn’t causation but it does make sense that if your immune system has been triggered to react, it will do both things. I achieved remission, and whilst I continue to live with the consequences of my immune system over reacting, I am hugely grateful I had the drug. 

Incidentally this section of the site is intended for people to blog their stories, so you may get more reaction on the kidney forum where more people will e present. I will however tag in another lady Mmum who has kidney cancer, was treated with ipi/nivo and also had an IRAE. She has a blog in this section called Kidney Not, if you would like to read her experiences. Mine is A Trip with Triple Negative Breast Cancer. My main IRAE was Sept 23. 

Suggest you post this as a new post in  Kidney cancer forum where you will have greater reach and wider experiences.  People generally don't browse the blog area - they join their group(s) [forum(s)] and follow that only.   There's lots of people in the kidney form with experiences with ipi/nivo across the spectrum.  

As you've read in my blog (Kidney Not) I've had lots of niggly side effects, few of them in the patient info leaflet.  The hypothyroidism is interesting. I was always freezing and eventually it annoyed me so much I raised it with my onco. He advised my numbers were right on the edge but not enough to rectify with drugs.  I think I started the scancell trial soon afterwards and that seemed to improve things - better balance within the body.  I'm glad because I was considering heated socks at £30.  But then the inevitable follow-on that your shoes don't fit any more,so you're in the shoe shop,next. . . . . .    

Gaps in treatment don't alter outcomes.  I had read this before it happened to me.  It doesn't help. Knowing it doesn't alleviate the desire to get back on the treatment.  Nothing can help the anxiety.    Time helps and a trend in scan results. 

Just to sum-up - in the Kidney group there are people who have been on ipi-nivo with stable outcomes but no shrinkage, side effects from nivo which caused them to stop treatment but no ill-effects from the cancer, fatigue, and a variety of experiences inbetween.   

I had Nivolumab for 3 months after chemo (Gem/Cis) and bladder removal for muscle-invasive bladder cancer. I got peripheral neurosis (hands and feet) so they stopped the treatment and gave me steroids to damp things down. My hands recovered well, the feet, especially toes, were still sore. The Oncologist said that while they would have pushed on with the immunotherapy as a primary treatment, as a second line treatment they wouldn't. This way she still has options in case of recurrence. 

I was lucky not to get the PN after chemo so was not pleased it happened. However, as well as the steroids I've just got orthotics from a podiatrist using a foam base described as made for those with PN and those, supporting my arches have really improved my feet.