Esophageal cancer treatment: Anyone have good experiences to share?

Posted by earnest @earnest, May 28, 2024

Hello troops. Does anyone have any good news about their treatments? All I've been reading are horror stories. Not very encouraging at all. I'm on my second week of radiation and chemo, and the first chemo didn't go well. Not meaning to add to the horror stories, but it made my stomach ache really bad. They stopped and gave me steroids, I think. Now I'm hearing these stories about leaking chemo causing pain, makes me apprehensive. So if anyone has had a GOOD experience, PLEASE share it!

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Hello GB, when were you diagnosed? Where did you get treatment? My husband s doctors just told us yesterday that surgery was not an option. We sre stage 3 with lymph nodes involved. We also thought chemo radiation then surgery with possible immunotherapy, advice appreciated.

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When I was diagnosed with Stage 3 EC, I searched online and found someone who had survived, at that time, 18 years after treatment. He was very encouraging and I did everything he said to do. I had chemo, radiation and surgery, and also did natural approaches such as hypnotherapy, massages, reducing stress, flower therapy, healing, ginger water and anything and everything anyone suggested. I am now going on celebrating 11 years. There were challenges of course -- I got a pulmonary embolism after chemo -- but a positive attitude and trying every possible avenue to find success contributed to my outcome. It also kept me very busy so I didn't have as much time to reflect on it all. It is difficult when you're in the middle of it, but there will be brighter days! My best wishes to anyone facing this situation at this time. Also, of course, get the best doctors you can find.

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Profile picture for earnest @earnest

Well now. That is a compelling testimony. I see that you ate a follower of the Lord Jesus as am I. Sometimes I get down in the dumps, I have esophageal cancer and am awaiting surgery. I have no pain, thank God. But I did lose 40 lbs, and that's not good when you're starting off at 165 and 6 feet tall. I went down to 120 lbs. After chemo and radiation I had no appetite and everything tasted horrible. But after about 3 weeks post treatment, my appetite is coming back and I'm gaining a couple of pounds back. I pray for your husband and you, I know you are going through this with him. Your words are encouraging, seeing as how things aren't working out how you'd like, but you still have your faith. God bless you! I wish you both the best and thank you for that encouraging testimony 🙏. Your brother in Christ, Rick

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Hi Rick,
What an encouragement. I sit now, next to his death bed, my 12-year-old on her device nearby and my 7-year-old sleeping at Auntie’s house. I don’t want to see anyone else, because I know the look in their eyes will force me into the reality that this is really happening.

I learned a lot this year and I strongly encourage all esophageal cancer patients to attend Molecular Hydrogen Institute’s Summit in September.
https://h2mhisummit.org/

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My husband was able to eat anything before the surgery. The husband has had no real side effects a few times stomach was queasy. This was after radiation. At chemo none. Being a nurse I asked for an extra bag of fluids with each chemo. He sat longer but never got dehydrated or sick. Dehydration can go with chemo often. He just had his surgery and all went well. Jtube is unusable and clogged. So I am trying to figure out calories and protein. He gained a few pounds from the hospital. I ordered unflavored Whey powder that you can add to anything to increase calories and protein. He takes his pills with Gatorade. I have been making pureed food. Will increase his diet in a few weeks I need to make sure his new innards are working well. Saw our PCP today she is amazed at how well he looks.

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Profile picture for relicmeister @rselicmeister

Other than my PEG tube falling out last night and going to the ER where they put in a foley catheter until I get the correct one put in by my gastroenterologist today, I do have something positive to share. Over the past week, I’ve been able to drink fluids quite well, and I’ve been able to swallow loose mashed potatoes with gravy, which means there are many soft/ wet foods I will be able to eat. These are the first foods by mouth since mid June so I’m quite excited. Of course I get almost all of my nutrition through my feeding tube, but will be supplementing with “real foods” every day now, and hoping for small, well chewed and rinsed-down pieces of burger/ hot dog, etc at a BBQ our son is having Sept 1. Well, that’s the goal anyway.
Also- my pain from the spine metastasis has diminished noticeably and I’m beginning to drop down in the amount of pain meds- and my stamina has increased somewhat, although the chemo keeps that down.
Starting chemo round 5 tomorrow. Wishing everyone well in their treatments. Stay positive.

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Your factual, no nonsense approach to the difficulties of EC is inspirational.
Wishing you continuous progress on the road of recovering quality of life,
clawing your way through and out, appreciating the little victories which for us
are huge victories. Best wishes and YES! Stay positive!

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Other than my PEG tube falling out last night and going to the ER where they put in a foley catheter until I get the correct one put in by my gastroenterologist today, I do have something positive to share. Over the past week, I’ve been able to drink fluids quite well, and I’ve been able to swallow loose mashed potatoes with gravy, which means there are many soft/ wet foods I will be able to eat. These are the first foods by mouth since mid June so I’m quite excited. Of course I get almost all of my nutrition through my feeding tube, but will be supplementing with “real foods” every day now, and hoping for small, well chewed and rinsed-down pieces of burger/ hot dog, etc at a BBQ our son is having Sept 1. Well, that’s the goal anyway.
Also- my pain from the spine metastasis has diminished noticeably and I’m beginning to drop down in the amount of pain meds- and my stamina has increased somewhat, although the chemo keeps that down.
Starting chemo round 5 tomorrow. Wishing everyone well in their treatments. Stay positive.

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Profile picture for carolineward @carolineward

Hi I'm.48 years old very fit and healthy with no underlying health conditions. I was getting my oesphectomy 2 weeks ago then when they opened me up there was microscopical cancer cells. I was devastated. Now I must get more chemo. I had a really good response to my first treatment if chemo before I went fir surgery. I'm a bit in limbo land and quite scared to meet the encologist for the next plan.

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Praying all goes well.

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Profile picture for Don Higgins @dsh33782

Earnest
I had 28 chemo and radiation treamtents for EC and it worked. My tumor is now gone. I did have some side affects including caughing and being tired all the time. Scans are clear now. I'd be happy to answer questions.

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Hi I'm.48 years old very fit and healthy with no underlying health conditions. I was getting my oesphectomy 2 weeks ago then when they opened me up there was microscopical cancer cells. I was devastated. Now I must get more chemo. I had a really good response to my first treatment if chemo before I went fir surgery. I'm a bit in limbo land and quite scared to meet the encologist for the next plan.

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Profile picture for justtrust @justtrust

My husband was diagnosed in July 2023 (1 year ago), stage 3 if I recall correctly with metastasis. In Sept, on our girls’ 1st day of school they informed us that it was incurable and estimated 1 - 1.5 years. Folfox & Opdivo immunotherapy started in October reduced the tumour, returned his ability to eat. He had 4 “good” days out of every 14 for half a year. Exhaustion and nausea. But the neuropathy was intense by March/ April so it was time to quit it. Soon after, the tumour started to affect his swallowing again. He was losing what little weight he had left and losing the ability to consume food again. We learned the cancer (aggressive HER-2+ adeno, if I recall the right terminology) had spread to his stomach and cramps & pain were added to the difficult experience.

Out of their back pockets, the medical team brought radiotherapy. So far, it seems to have just kicked him when he was down. He went from starving & active to starving, nauseated, and in bed all the time. The hope is that he will begin to recover from the side affects of the radiotherapy, but as I watch his body waste away, I have my doubts.
I’ve learned about a promising complementary treatment called molecular hydrogen (if you ask AI, ChatGPT, Pi, etc., that is what they say: “promising”. PubMed calls it promising too). We are looking to have the therapy administered in a targeted way, which is pretty damn experimental. Perhaps we will succeed in getting the health system to bring it in through Canada’s Special Access Program. Perhaps we won’t. Perhaps it will help him. Perhaps it won’t.

But you asked for hopeful stories: Here’s the bottom line. For my husband, for me and our two girls, Jesus has been present with us every day through this journey. He has not forsaken us, even in the most dire circumstances. He has removed virtually all fear. For us, to live is Christ and to die is gain.
Blessings!

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Well now. That is a compelling testimony. I see that you ate a follower of the Lord Jesus as am I. Sometimes I get down in the dumps, I have esophageal cancer and am awaiting surgery. I have no pain, thank God. But I did lose 40 lbs, and that's not good when you're starting off at 165 and 6 feet tall. I went down to 120 lbs. After chemo and radiation I had no appetite and everything tasted horrible. But after about 3 weeks post treatment, my appetite is coming back and I'm gaining a couple of pounds back. I pray for your husband and you, I know you are going through this with him. Your words are encouraging, seeing as how things aren't working out how you'd like, but you still have your faith. God bless you! I wish you both the best and thank you for that encouraging testimony 🙏. Your brother in Christ, Rick

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Profile picture for justtrust @justtrust

My husband was diagnosed in July 2023 (1 year ago), stage 3 if I recall correctly with metastasis. In Sept, on our girls’ 1st day of school they informed us that it was incurable and estimated 1 - 1.5 years. Folfox & Opdivo immunotherapy started in October reduced the tumour, returned his ability to eat. He had 4 “good” days out of every 14 for half a year. Exhaustion and nausea. But the neuropathy was intense by March/ April so it was time to quit it. Soon after, the tumour started to affect his swallowing again. He was losing what little weight he had left and losing the ability to consume food again. We learned the cancer (aggressive HER-2+ adeno, if I recall the right terminology) had spread to his stomach and cramps & pain were added to the difficult experience.

Out of their back pockets, the medical team brought radiotherapy. So far, it seems to have just kicked him when he was down. He went from starving & active to starving, nauseated, and in bed all the time. The hope is that he will begin to recover from the side affects of the radiotherapy, but as I watch his body waste away, I have my doubts.
I’ve learned about a promising complementary treatment called molecular hydrogen (if you ask AI, ChatGPT, Pi, etc., that is what they say: “promising”. PubMed calls it promising too). We are looking to have the therapy administered in a targeted way, which is pretty damn experimental. Perhaps we will succeed in getting the health system to bring it in through Canada’s Special Access Program. Perhaps we won’t. Perhaps it will help him. Perhaps it won’t.

But you asked for hopeful stories: Here’s the bottom line. For my husband, for me and our two girls, Jesus has been present with us every day through this journey. He has not forsaken us, even in the most dire circumstances. He has removed virtually all fear. For us, to live is Christ and to die is gain.
Blessings!

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Trusting and leaning on Jesus! Praying for your family 🙏🏻🩷

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