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Anyone else finding immunotherapy a challenge?

Posted by deemold @deemold, Mar 26 6:16am

Hi everyone- I am post surgery (11/3/25) for Squamous Cell EC- Stage 3. Did 6 rounds of chemo and 28 radiation prior to surgery....started immunotherapy in January. I am finding the impact of immunotherapy on my mood/ energy and the way I metabolize medications to be far greater than I expected. Namely- I feel REALLY down and "blah" for awhile after.
I can't determine if this is me trying to do too much when I was giving myself more of a break (or maybe it was that the world gave me more of a break?) when I was doing the chemo/radiation and at that point it was clear that I was going through something, but now that I am post surgery and back to my regular routines that it is assumed I am no longer going through a thing by the world around me?
I don't know. I only know this feels like a greater struggle than the chemo/radiation...

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mrgvw | @mrgvw | Apr 10 9:42am
In reply to @supportivewife "Oh my, yes....My husband had the tri-modality treatment (chemoradiation with MEI Ivor Lewis esophagectomy) followed by..." + (show)
Profile picture for supportivewife @supportivewife

Oh my, yes....My husband had the tri-modality treatment (chemoradiation with MEI Ivor Lewis esophagectomy) followed by 12 months of nivolumab (Opdivo). He was a prime candidate for nivolumab given he has Lynch syndrome and had colon cancer with resection the year prior to his esophagectomy (a rough few years). He had a number of issues with the immunotherapy including fatigue and GI issues - it was a struggle. He did manage to finish the full course of nivolumab but he came away with immune related sides effects including pneumonitis which required long-term high dose steroids for 2 years. Once he came off the steroids, we saw that he also had joint issues (rheumatoid, most likely due to nivolumab as well) and adrenal insufficiency due to the high dose long term steroids. We finally got him off steroids in December of 2025 and his adrenal insufficiency has abated. The steroids actually helped minimize dumping syndrome so now that he is off...well, you know the story. He has been off nivolumab for almost 2 years now and things have gotten better but it has been slow. There is hope at the end!

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@supportivewife

I followed the exact same path as your husband... other than having Lynch Syndrome and colon cancer surgery... and I never took any additional steroids on my journey other than what little was given as pre-meds before chemo infusions started. I am almost 6 years post-op. I saw almost nothing from my year of adjuvant Opdivo, thought they were giving me water.

Sounds like he is doing well!

Gary

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