18 months in on Immunotherapy- side effects

oh how interesting!  First all, it's great to read of your good results.  I had a few niggly side effects on ipi / nivo and one of being freezing cold.  I suspected it was caused by the nivo.  My onco said my markers were right on the limit, but we agreed to watch it for a bit.  Then I started on a trial, Modi-1 vaccine and I felt normal again and not as cold.  The side effects I had were:

1/ impaired kidney function after too good a reaction to the nivo.

2/ dry eyes

3/ dry mouth - eating some foods was a challenge eg crisps, bread, buscuits. 

4/ nasal congestion - very annoying.  I had this from Q4 2022 until 2024.  I stopped treatment in June 2024 but it really did improve after 18 months and you wouldn't know now.  At the height of it, I would sound like I had a bad cold and people would comment on it.  Tricky times as I never went public!  But you can imagine the potential conversation; "do you have a cold?",  me: "no, I've got cancer!".   haha!

You can read my blog here.

Thank you Mmum for your reply.  Interesting how everyone has a different experience on this ‘journey’. 
I’m guessing the vaccine trial you were on was for quite a while? Have you have good results with it? Are you just on scans only now? 

I was told the Niv ( + Ipil - 4 cycles) would be for a max 2 years or until disease progression - so until next spring all being well.  I’m always reading the forums for people who’ve been through this and are still here after several years, giving hope that this is all worth it! 

I will read your blog Mmum, thank you for your reply.  X

Hi, Cardcrafter My treatment story is pretty much the same as yours, including the hepatitis and thyroid issues and positive results. I found the sore joints and fatigue made it hard to get going but improved when I did get going; just had to force through it.  I can't remember if it got better over time or whether I just got used to it. I don't think I had any new side effects after six months.

I lasted a year on Nivolumab alone, then my tumour started to grow and multiply.  The good news is that there are more options and a switch to cabozantinib has seen further reductions and different, probably fewer, side effects!

I think I can cope with most side effects when the treatment is working.

Best wishes for your ongoing treatment.  

Hi SandyN. It is reassuring to read that someone else has had a similar experience as I have. So far the Nivolumab has kept things stable for me - I think I’ve had 9 infusions of Niv alone. Awaiting latest scan results later this month - it is a time we all worry about I know   #Scanxiety! It’s good to know that other options are available though if the Niv stops doing its thing as it appears happened to you. 

thank you for your post, I wish you all the best with your ongoing treatment too. 

I was on the vaccine trial for 18 months.  I had been on ipi/nivo for 18 months prior to that.  I've been very fortunate to have good results with it, but I had 3 months off treatment with the adverse reaction from my kidneys.  I was so distraught about it, even though I kept reading papers that said it made no difference to the long term outcomes!  I laugh about it now .  

I didn't know about the 2 year thing.  I thought it was forever, and then I thought it was cancer-type specific.  Then my onco kept telling me that you've had the benefit after 2 years.  They also told me I could stay on it for as long as I wanted.  Another immune related adverse event was the final straw and I decided to stop.  I made sure I did 2 years then a bit more to make up for the period I didn't have any treatment. An irrational strategy with no medical base!  But my onco agreed with me straight away.   

I just go in for scans twice a year, but I don't get worried about them.  I can't see how it could be worse.  I've already been told I've got cancer, it's incurable and I've got 5 years to live.  I accepted my fate in 2022.  I felt so sh1t in the months before the diagnosis and beyond, and I never realised.  If it grows again, I think I'd feel rubbish again, but I would realise this time.  

I think I will cry when my onco and I shake hands, and I return to primary care.