Where are your current experiences with immunotherapy?

Posted by deserthykr @deserthykr, May 20 5:09pm

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?

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

I am doing immunotherapy with chemo no side effects, now what it's doing I'm not sure, but it is something. Keep trying and heads up its going to be ok. Keep praying that's the main thing.

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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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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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Thank you.

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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

Jump to this post

Diagnosed 7/2021 w/stage 3 squamous cell carcinoma of the esophagus and had chemo & proton radiation treatmens at MD Anderson Houston. PET revealed the tumor was gone after these treatments. After 7 weeks rest at home returned for esophagectomy surgery but new PET revealed cancer returned in 2 new locations. Surgery cancelled and new staging was 4B metastatic. Protocol for next round of treatments could be administered at a cancer center at home . So, I started a new round of chemo with immunotherapy (Opdivo) shortly after Christmas. I also signed up for periodic Signatera liquid blood biopsy tests which detects if any DNA of my cancer is present in my blood. On 3/1/22 after chemo ended once again no evidence of cancer. Stayed on Opdivo for about an additonal 20 months but side effect got rough. Here i am still in remission w/o immunotherapy but I continue to get Signatera blood tests about every 3 months and I have had "0" scores every time meaning no evidence of my cancer's DNA in my blood. For me immunotherapy was the game changer in a very bleak prognosis. BTW I'm 74.

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@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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My husband was diagnosed with esophageal cancer in March. The Petscan in April showed it is locally advanced but not metastasized elsewhere. He is diagnosed as potentially curable. The plan is for 6 FLOT chemo treatments followed by a scan and possibly a couple more cycles and if results are good, surgery. Some radiation may be added if necessary. Between the 1st & 2nd treatment added tests on his biopsies revealed the cancer cells are HER2 Fish positive and the PD-L1 Combined Positive Score (CPS) was 15 indicating he qualifies for immunotherapy. The oncologist added Trastuzumab Immunotherapy to 2nd treatment and all chemo cycles going forward (every 3 weeks) as added defense against the cancer. This immunotherapy can be hard on the heart so they are doing periodic echocardiograms to ensure his heart remains healthy. As far as the treatment itself, his side effects were no worse with the immunotherapy. Only time will tell how much it helps. The oncologist also told us assuming we successfully get through surgery that the plan would be for an additional year of immunotherapy for prevention. Not sure if it would be the same or a different medication - I imagine that will depend on many factors. Best of luck to you!

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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?

Jump to this post

After chemo/radiation and surgery, I started immunotherapy (end of Feb 2023). Opdivo is what I am on. When it metastasized to my liver, we kept on and it was combined with chemo. When I got clear scan in September, we stopped chemo and continued with immunotherapy. I am still on immunotherapy and had clear scan in Jan and another in Feb. I think diet also has a ton to do with it, Fasting Cancer by Valter Longo, check it out. Fasting and the timing of it can make chemo and immunotherapy more potent (and even require less amounts, so less side affects). Anyway, let me know if I can help in any way!

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Profile picture for dillknox @dillknox

Diagnosed 7/2021 w/stage 3 squamous cell carcinoma of the esophagus and had chemo & proton radiation treatmens at MD Anderson Houston. PET revealed the tumor was gone after these treatments. After 7 weeks rest at home returned for esophagectomy surgery but new PET revealed cancer returned in 2 new locations. Surgery cancelled and new staging was 4B metastatic. Protocol for next round of treatments could be administered at a cancer center at home . So, I started a new round of chemo with immunotherapy (Opdivo) shortly after Christmas. I also signed up for periodic Signatera liquid blood biopsy tests which detects if any DNA of my cancer is present in my blood. On 3/1/22 after chemo ended once again no evidence of cancer. Stayed on Opdivo for about an additonal 20 months but side effect got rough. Here i am still in remission w/o immunotherapy but I continue to get Signatera blood tests about every 3 months and I have had "0" scores every time meaning no evidence of my cancer's DNA in my blood. For me immunotherapy was the game changer in a very bleak prognosis. BTW I'm 74.

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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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Profile picture for dannymac23 @dannymac23

After chemo/radiation and surgery, I started immunotherapy (end of Feb 2023). Opdivo is what I am on. When it metastasized to my liver, we kept on and it was combined with chemo. When I got clear scan in September, we stopped chemo and continued with immunotherapy. I am still on immunotherapy and had clear scan in Jan and another in Feb. I think diet also has a ton to do with it, Fasting Cancer by Valter Longo, check it out. Fasting and the timing of it can make chemo and immunotherapy more potent (and even require less amounts, so less side affects). Anyway, let me know if I can help in any way!

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Ha, fasting is not fit me! Since I unintentionally lost 20 pounds in chemo, I am eating whatever I can whenever I can!!

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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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Keytruda. + Herceptin.

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