Where are your current experiences with immunotherapy?

Posted by deserthykr @deserthykr, May 20, 2025

I gave called an end to treatment! More than enough radiation, and enough chemotherapy. My oncologist may be suggesting immunotherapy as maintenance treatment. Have others had this?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@deserthykr, in addition to the helpful post you've already had, I'm tagging a few more members like @bjromsek @cottonsunflower @grac3honolulu @zzonner @dannymac23, who have had immunotherapy to treat esophageal cancer. I'm not sure if they were using it as maintenance therapy however.

Deserthykr, what immumotherapy was suggested for you?

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Thank you!

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I was diagnosed with esophageal adenocarcinoma, stage 3, with a mismatch of two of the 4 mismatch repair proteins. This showed that in research studies chemotherapy and radiation were not effective treatment but immunotherapy could have a dramatic effect. I went to MD Anderson to have their input. They prescribed immunotherapy for a year. I then had the immunotherapy at my local oncology center. The infusions were for a year, every two weeks with Nivolumab and then Ipilimumab added every 4th week. I finished this protocol on Feb 28, The following endoscopy with biopsy and the PET scan showed no signs of cancer. Next week I get a 3 month endoscopy and PET scan followup.
As far as immunotherapy symptoms go, I had some fatigue and more markedly, itchy skin with some little scabs, caused by the itchiness itself and my scratching.. It was annoying and I appreciated dry brushing and oatmeal-washing soaps. It wasn't bad enough to make me want to take cortisone. I occasionally took a benadryl which helped some. I still have itchy skin, although less so. all in all, I was happy to get the immunotherapy, since side effects are usually much less then with chemotherapy. My best wishes in your treatment plan.

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Profile picture for libbybob @libbybob

I was diagnosed 13 months ago with esophagal cancer.
I went through several months of imunotherapy after chemo and radiation with no visible improvement. My doctor told me it doesnt work for everyone but if it works for even one person it is worth giving it a try.
Blessings,
Libby

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@libbybob, what, if any, treatment are you on now? How are you doing?

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Profile picture for mrgvw @mrgvw

I too did Opdivo... but only the typical 1 year of 12 monthly infusions... but in the adjuvant setting (I'm adenocarcinoma and not squamous). I am always curious as to when and why Opdivo is applied... for a few reasons.

One... how quickly was PDL1 tumor expression known? And if at diagnosis, why wasn't Opdivo or Keytruda used concurrently with first-line treatments? Why was Opdivo used in the adjuvant setting? Is this due to % of PDL1 expression... or simply because of how clinical trials were run for each of these immunotherapy drugs, back in the day?
When we're your Opdivo side effects first noticed, right away? Or not much at all until the second year of infusions?
What were your specific sure effects... rash, severe itching? Joint pains? Lung inflammation? Other?

So happy to hear of your re-admittance to the NED club! Keep it up. And btw... I've been doing those Signatera blood draws since Oct 2020 about every 3 months. I believe they just completed my last testing last week as I'm 5 years post-op in July... They're no longer going to monitor me. I suppose they will deem me cured. Not sure how I feel about this... but I'm scheduling my last CT scans now. Be well.

Gary

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While i cannot answer your inquiry regarding PDL1 tumor expression, it is my understanding that Opdivo was not approved for my type/stage of cancer until a couple of months after my initial treatment commenced. So, when it returned in 2 new locations it was then available to use in combination with chemo. In terms of side effects I initially had some mild itching, followed by a gradual increase in frequency of diarrhea. In the final 11 months of Opdivo treatments the grading of the SE rose to severe and treated as colitis even with high doses of prednisone. It should be noted that it was my choice to continue the Opdivo treatments with very close monitoring by my docs until I decided to quit. Subsequently, the prednisone was replaced by budesinide and the symptoms reversed to normal in about 3 to 4 months. While I have had osteoarthritis for years since young adulthood, joint and bone pain also increased during Opdivo use although mediated by the steroids. Pre-existing AMD vision issues seemed to be exacerbated by the length of immunotherapy treatments, but a direct correlation cannot be confirmed. Upon rereading this reply my history seems dreadful, but it was manageable with careful day to day planning. During my treatment journey my husband was diagnosed with early-stage dementia and I can declare that my cancer journey is and has not been as difficult as the dementia journey or my role as a dementia partner.

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