Anyone else finding immunotherapy a challenge?

What immunotherapy treatment are you on? I am starting monthly infusions after 8 rounds of FLOT and surgery to remove my esophagus & stomach. I had some fatigue with Imfinzi and I’m having trouble sleeping. Not sure what’s a side effect and what’s just me. Also got an annoying itchy rash on my lower leg. That is a documented side effect. Good luck this is a long journey.

I'm on Opdivo. The statement "not sure what's a side effect and what's just me" sums it up perfectly.

I’m 5 years post esophajectomy. I was scheduled for 12 months of Opdivo but only did 10 months. I developed colitis and psoriasis which went away a few months after stopping Opdivo. The Opdivo however destroyed my Thyroid.
Your Thyroid controls just about everything in your body including digestion. I had thought that most of my digestive issues were a side effect of the surgery until my thyroid was treated properly. I no longer have fatigue, brain fog, 20% of thyroid patients don’t have their hypothyroidism symptoms resolved with the standard medication of Synthroid.

I am also finding it a challenge. I started pembrolizumab 3 weeks ago, my moods are swinging. I don't know if it is a side effect or just the anxiety of the 'What if's" I go back in 2 more weeks to see if it has had any positive impact. Anyone else on this?

I hear ya. I was scheduled for 12 months, every 2 week Opdivo infusions. I've experienced terrible fatigue and ultimately liver, lung and glaucoma maladies. We finally stopped treatments last August. My liver is back to normal, but my fatigue, lung and glaucoma persist. Make sure your doctor is testing for these side effects. I think the depression is normal given the length and persistence of immunotherapy treatment. I hope things turn positive for you soon.

Mystery solved- thyroid levels were rechecked after one week since last immunotherapy and they more than doubled. They went from being on high end of normal to very abnormal levels. Meeting with an endocrinologist tomorrow. I feel validated

Hi,
I have had just four bi-weekly treatments of Opdivo concurrent with Folfox, of which I have had eight infusions since November, 2025. The Opdivo wipes me out for all two weeks post infusion, and a thyroid test recently found pronounced hyperthyroidism. I guess the oncology team isn't too concerned because they want me continuing the Opdivo; however they will schedule a consultation with an endocrinologist like Deemold above.
I have Stage 4 and want this treatment to help. Online I saw two medical studies that claim thyroid dysfunction with nivolumab augers a higher rate, longer duration of survival. Hope that's true because meantime I feel plain awful.
Marcia

@deemold, thanks for letting us know that you found thyroid levels were out of whack. How did the consult with the endocrinologist go? What has helped?

Thanks for reaching out- I was put on levothyroxine for thyroid replacement and myPsh is coming back down already. However- I made the decision, and my MD supported it- to at least pause immunotherapy for a month, possibly (likely) discontinue altogether unless I find compelling reason otherwise- in addition to the depression, fatigue (both of which were there to some degree prior to thyroid numbers skyrocketed)- there is a clear connection that the immunotherapy has resulted in high glucose levels- making me pre-diabetic at this point. So- I'd be looking to go onto another Rx to have to manage that as well. I can't fix it with my diet/lifestyle- as those are on point.
So- I might be at that point of "I was able to do it for three months, which is better than nothing." My surgery was not NED, but the microscopic cells they found were in the removed tissue...and I had clear surgical margins...so my immunotherapy is preventative, rather than treating remaining tumor.