Immunotherapy

Hi ChrisB24 

How is your husband doing ? 
He’s been on immunotherapy for a while, hasn’t he? 
Have a look at the profile of one of our forum members Crofterlad 

He is over a year clear of cancer after a two year course

and has a link to his blog on his profile. 
He will likely pick up this tag and reply 

Hi Chris, 

I had immunotherapy following chemotherapy. The immunotherapy was Rituximab (maintenance) given every 2 months over a 2 year period. The aim of which is to keep my cancer in remission for as long as possible. 

Side effects were mostly fatigue - feeling tired, some insomnia, occasional indigestion and occasionally constipation. 

I’m presently 3 years in remission since completing immunotherapy in 2022. 

He’s doing good, goes every three weeks for immunotherapy. It’s still hard for him as he always thinks it’s going to come back. He has regular scans and goes back to ent. It never leaves his mind.  I’ll check that crofterlad, thanks.

Hi Chris, as Beesuit mentioned, I was diagnosed with stage 4 head & neck cancer in 2021 (it has metastisised to my lungs). I started getting 6 weekly infusions of Pembro(lizumab) as pallative care. But I had very few side-effects and so was able to undertake the full 2 years treatment. 

My side-effects were fatigue for 24-48h after the infusion, but then nothing else. Before each infusion however I was called by phone to check I was feeling OK (.e.g no gastrointestinal issues) and had bloods taken to make sure cell counts were at acceptable levels. 

I don't know where you live, but in the UK immunotherapy drugs for Head & neck cancer, like Pembro, are only licensed for 2 years. When I came to the end of my treatment at the end of 2023 I had no evidence of disease, but I still have CT scans every 3-4 months to check the cancer has not returned everywhere. 

Best, wishes, Anson

The psychological effects of being on a treatment like immunotherapy really are a  mind-fuck (pardon my language!), and if I'm being honest still affect me today. If your partner (?) would ever like to chat over Zoom or Teams, I'm more than happy to do that. Sometimes speaking is easier than writing... Ans 

That's great Tryingnottorehearsetheoutcome ! Do you still get regular scans? My treatment stopped in November 2023, but I still have CT scans of head and neck, thorax and abdomen every 4 months.  I've not met anyone who's in my position to be honest, so glad to see there are others! Best, Ans

Did you have scans while you were on immunotherapy? He hasn’t been on it a year yet and not sure how long, so far no side effects and bloodwork come out good. Just a constant worry for both of us. I’ll ask if he wants to reach out, thanks.

Yes, I had scans every 12 weeks during treatment. Like a few others I kept a blog of my experiences, physical and psychological e.g. https://ansmackay.wixsite.com/uclgeography/post/and-yet

I still see my oncologist every 6 months, and have annual CT scans. 

I completely understand the fear of it coming back. When I feel overwhelmed at the thought it returning, I remind myself that research and treatment are moving forward all the time. Advances are being made, especially in the area of immunotherapy, and the important part our immune system plays in fighting cancer. 

And, mostly I try to live by the phrase ‘don’t rehearse the outcome’, as it’s easy (and understandable) to imagine the outcome to be the worst. Instead I try to think, what if the outcome is the best…