Esophageal cancer treatment: Anyone have good experiences to share?

How early were you detected?

No problems here. I had 7 Chemo and 32 Radiation treatments back in 2019. Can’t say I would want to go through it again but it was uneventful. I did feel like crap a few days a week but that was pretty much expected. No nausea. They will probably adjust your “Chemo Brew” so you tolerate it a little better. Good Luck.

1/21/25 HI Don I'm John in cold north central Wisconsin. I've had acid reflux all my life. I'm 63 and late last summer I got some swallowing symptoms but was really busy with property excavation improvement so didn't get going on it until November. Then I signed up at health,gov ok and got appointments and esophogram in December which revealed ugliness and narrowing in lower esophagus. Endoscopy couple weeks ago confirmed adenocarcinoma. Yesterday was the CT scan. Appointment with oncologist soon on Jan 29. I'm strong and healthy otherwise and very active, not afraid of chemo or surgery. Waiting on stage determination. I hear that by the time you get symptoms it usually getting advanced. Fingers crossed. I feel fine just have a lousy time getting first bits of food down. I hear its slow to develop and fast to get worse. How did you discover it?

My husband had 2 GI bleeds. The second endoscopy revealed a mass at the GE juncture. After CTs and Per scan was dx w stage 2 cadenocarcinoma of the GE juncture. Completed 4 rounds of FLOT chemo. Surg on 12/31 cancer gone no Mets no lymph node involvement BUT he had a leak from the connection of esophagus and stomach and therefore is still without eating or drinking. He has a JTube for feedings. A chest tube for drainage from the leak. He is home. Not that happy but on the road to recovery. He still needs 4 more rounds of FLOT chemo. Good luck on your journey.

I was diagnosed with Stage 4 Esophageal cancer the week of Christmas 2019. Started chemo and was worried about losing hair or other side effects. Glad to report I had NO side affects from the chemo. The radiation was another story. Was OK for about a week but then my throat felt like it was burned and it really hurt to swallow. Oncologist asked Radiologist to give me a few days off but Radiologist only wanted to give me 2 days off! Glad my Oncologist prevailed and I got 2 weeks vacation from radiation and my throat healed.

Can I ask what your chemo regiment was? Thanks for sharing.

Do you mean how often did I have chemo? If so, it was once a week for a couple of months. Had no problems at all with it.

I originally was diagnosed with stage 3, locally advanced esophageal cancer in May, 2024. Ultimately, they said it was stage 4 due to leakage to a neighboring lymph node. I was on a clinical trial and received two sessions of Folfox 5 chemo along with 5 weeks of radiation. Medicare initially declined Proton Beam radiation so I received standard Photon treatment. After 4 sessions, I developed pericarditis which mimicked a heart attack and I spent 5 days in the hospital, two in cardiac ICU. I recovered from the pericarditis and continued on with the original plan of Proton beam radiation (Medicare finally approved our appeal). By this point, it's mid-Septmber and my Ivor Lewis esophogectomy was scheduled for November 1. By then, my tumor was essentially gone. I underwent successful surgery with full removal of the tumor and clear margins. I spent 10 days in the hospital and another 3 weeks of home care on a feeding tube. I'm happy to say I'm in remission, but continuing treatment of immunotherapy for 12 months to decrease the odds of recurrence. I'm 11 weeks out and spending 2-3 hours at the gym doing strength, balance, mobility and aerobic training. My appetite continues to improve and I continue to get used to small meals and snacks 5-6 times per day. I'm getting stronger each day and more comfortable with my new norm. It hasn't been easy, but with work, positive attitude and family/friend support, it gets better.

I wish the best for you and feel free to send me a question if you want while you recover.

You have so many more changes coming... and much more improvement coming as well (I'm stage 3 too, and pretty much did everything you did). But it's so slow in coming... can be very depressing. I saw major improvements in eating, volume, sleeping, pooping, you name it... even from 12 to 24 months post-op. Just accept nothing as the new normal... my view was I wanted to be like I always was... in terms of what I ate before EC came calling. And since most everything hurt my new stomaphagus and caused me intestinal issues... I thought what the hell am I going to cut out of my diet?! Everything?! So instead, I changed nothing... dairy, sweets, carbs, proteins... I just kept shoveling it in until my body re-wired itself to get the job of digestion done once again. Took a good bit... but I'm there now. And I'm shocked how much I can eat now... in one sitting. Just a weird journey. Hang tough... but your attitude is great!

Gary

Hey Gary,

Was the article on Survivor.net about your journey?