Proton therapy for esophageal cancer: What are the side effects like?

Posted by donnawmsbrady @donnawmsbrady, Dec 27, 2023

My husband starts proton therapy today (after surgery). He actually was beginning to feel better, eat more, have more energy. Now he’s expecting to feel just awful again. Any thoughts… even if they confirm his fears. We’re hoping proton therapy might not be quite as hard on him as other treatments.

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I had proton radiation treatments (25) at Mayo two years ago. About a week or two into the treatments I began having symptoms -- fatigue, nausea mostly and difficulty eating anything other than soft foods. It wasn't pleasant but it wasn't horrific either.

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My experience was the same. Proton therapy wasn’t awful; was the easiest part of chemo, radiation and then surgery.

Good luck!

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Hi @donnawmsbrady, I hope you saw the helpful replies from @gdj and @jlmcclure. How is your husband doing with proton beam therapy? How many sessions has he had and how many more to go?

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I had treatment for esophageal cancer in 2019-proton radiation, chemo and surgery all at Mayo Clinic, Rochester. I had no pain, nausea, or any problems with eating or drinking. The fatigue came on slowly and only noticeable as I neared the end of treatment as I walked often at a local gym or the treadmill at Hope Lodge. I'll be a 5 year cancer survivor from the date of my surgery the end of this April.

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@colleenyoung

Hi @donnawmsbrady, I hope you saw the helpful replies from @gdj and @jlmcclure. How is your husband doing with proton beam therapy? How many sessions has he had and how many more to go?

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We did see the helpful replies. Thank you to all. John had treatment number 7 on Friday. He is doing pretty well so far. The main thing he notices is fatigue.(No nausea, no trouble eating, a good bit of constipation, though.) His last treatment will be February 1. His chemo doctor said that if he's like most people, the week after treatment ends will be his worst. Oh boy!!

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Hi,
I had 5 weeks of proton beam therapy at Mayo Rochester, Fall 2020. I got a weekly infusions of Tax chemo on shotgun. I continued 'work' in my room in the downtown Marriot, during COVID (boring). I had very few health issues during this period.
* Week 3: I learned what chemo brain is. My laptop keyboard and were no longer friends. My radiology nurse clued me in on chemo brain, it is real.
* Week 5: I started to 'feel the burn' in my throat, the proton beams were working! The burn, not horrible but certainly noticeable, continued until my esophagectomy in December.

After surgery in November 2020 we were playing a different game. Hope this helps!
Cheers,
Tom

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@tomhayes54

Hi,
I had 5 weeks of proton beam therapy at Mayo Rochester, Fall 2020. I got a weekly infusions of Tax chemo on shotgun. I continued 'work' in my room in the downtown Marriot, during COVID (boring). I had very few health issues during this period.
* Week 3: I learned what chemo brain is. My laptop keyboard and were no longer friends. My radiology nurse clued me in on chemo brain, it is real.
* Week 5: I started to 'feel the burn' in my throat, the proton beams were working! The burn, not horrible but certainly noticeable, continued until my esophagectomy in December.

After surgery in November 2020 we were playing a different game. Hope this helps!
Cheers,
Tom

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You and I are not too far apart (my surgery in July 2020)... yeah... Covid was hot and heavy... my wife saw absolutely zero... could not come in for one chemo, radiation, esophagectomy 11 day stay, or my year of immunotherapy.

But I can't say I noticed much from my CROSS protocol of weekly chemo and radiation treatments... I did 5 chemo and 23 radiation. I did not have proton beam radiation, but a more general sweep of the rumor area... they wanted nearby lymph nodes to be hit since I was T3N1M0.

But as for what made me feel lousy during treatments... I'm guessing more the chemo. Was just hard for me to discern what radiation was doing vs the chemo in terms of feeling lousy. I really didn't have any external skin rashes, and not much esophageal burning (although I'm sure the radiation shrunk my tumor BIG time! I could not swallow a tiny sip of water as my treatments began... I was 100% reliant on J tube feeds. But 3 weeks into treatments I could swallow half decently once again, and I did not use my J tube at all for the next 7 weeks leading up to surgery. Let's stay NED... we've got a shot now!

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You might also want to pay attention to staying hydrated. I had several infusions of fluids as radiation was ending and after. That will likely help with energy among other things.

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I had proton beam therapy for esophageal cancer, stage 3, in 2020 and had no side effects at all. It is painless and does not damage the surrounding organs like normal radiation treatments do.

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