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

I also had to have fluids, it was usually before each session. I dehydrate very easily so they added it to the daily session.

I actually started with 4 sessions of Photon therapy even though I was supposed to have Proton. Medicare denied Proton until after I contracted pericarditis after 4 sessions. I immediately started Proton therapy in my 5th session once the pericarditis settled and had zero side effects from the Proton therapy. I wish you the best. Double check your insurance.

Hi,
Recap:
* Late July 2020 diagnosed with esophageal cancer.
* Right after Labor Day 2020 - started proton beams and weekly chemo, 5 weeks.
* November 2020 - esophagectomy. Complications healing(leak), delay in the healing game. On the feeding tube into May 2021.

In late 2023 we found a growth in my perinium doing CT scan monitoring every three months. We tried an ultrasound biopsy then went back with a CT biopsy and of course it was malignant. We started FOLFOX (Oxaliplatin, Leucovorin and 5-Fu) the first of the year through November 2024. We ended the Oxaliplatin in the brew July 2024. (Oxaliplatin = neuropathy)

We detected growth in the cancerous cells in my perinium and switched to a RAMPAC (Ramucirumab (Rami) + Paclitaxel (Taxel))brew in January 2025.

I am in Grad school at the University of St. Thomas in St. Paul studying Master of Science in Artificial Intelligence (AI). This semester I am enrolled in two courses, completing 7 out of 10 courses in the program. Due to an aging body and chemo brain I have to work harder that the average student, but it is what it is. I am pulling decent grades. Hopefully we kick this heath thing and I go back to work with a shiny new masters degree in a hot field. If not, grad school has kept me busy and it is kind of fun.
I hope this helps.

Cheers,
Tom

I had no side effects from Proton radiation. Chemo felt like a mild hang over for a couple days a week. As my treatment progressed, I just kept gaining weight and kept getting stronger.

Tom. It is now April, 2025. How has things gone for you since your 2020 surgery?

Hi all, 03/30/2025
Thank you for sharing your experiences. Congratulations to those that have made it as far as you have! Prayers for all!
I have EC T2B. I am on a trial program at Rochester Mayo . (4 weeks of FLOT followed by; 2 weeks of FOLFLOX mixed with daily Proton.)
April 3 will be my 2nd FlOT infusion. I am not looking forward to the side effects of chemo and radiation but it pales in comparison to my concerns of surgery and rehab.
We all share a common bond in our shock, searching for education, positive answers, acceptance and fears of what the future will bring.
Rick

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.

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.

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!

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