Anyone needed a feeding tube during chemo and immunotherapy?

Posted by donnawmsbrady @donnawmsbrady, Oct 16 12:20pm

My husband might need a feeding tube during chemo and immunotherapy. Has anyone had experience with this?

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Profile picture for davidwrenn @davidwrenn

@earle I walked a few miles in your shoes. I was diagnosed with achalasia >40 yrs ago and suffered agonizing esophageal spasms on a near daily basis. Both wasn't an option at the time. I found that the use of sublingual nitrates or longer acting isosorbide dinitrate were fairly effective in providing spasm relief. I also used a dihydopyridine calcium channel blocker like nifedipine or diltiazam on a daily basis.
I eventually developed mega-esophagus and was subsequently diagnosed with stage 4 ESCC in 01/2019.

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@davidwrenn David, I had my second dilation last Friday. Since then, I've had no more spasms. (I knock on wood every time I say this.) I'm due for another dilation on 12/30. I'm at 13 mm now, so I think that may be the last one. I had tried every method you've outlined. I did not try Botox. My stricture is caused by ESCC, followed by chemoradiation. The scar tissue from the treatment is what they're stretching...

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Profile picture for Colleen Young, Connect Director @colleenyoung

@cancersucks1953, how did it go with putting in the feeding tube. Are you both getting the hang of things? How are you doing? Questions?

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@colleenyoung …Hi Colleen, The feeding tube has not been put in yet. The week we were scheduled he was in so much back pain that he couldn’t make the trip. They rescheduled for the first part of December. But in the meantime we have transferred to a different facility for his chemo treatments. Closer to home. Our new oncologist wants to do a couple more chemo treatments before a feeding tube is done. She is hoping for some shrinkage so perhaps he will be able to swallow. But he continues to lose weight. 50 pounds so far. On a good day he may get some soup down but that’s a hit and miss. He has no energy and Mayo stresses staying active. How is that possible with no energy? I’m worried but it doesn’t seem to be a priority. Oncologist says that having a feeding tube is a whole bunch of new problems.

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Profile picture for cancersucks1953 @cancersucks1953

@colleenyoung …Hi Colleen, The feeding tube has not been put in yet. The week we were scheduled he was in so much back pain that he couldn’t make the trip. They rescheduled for the first part of December. But in the meantime we have transferred to a different facility for his chemo treatments. Closer to home. Our new oncologist wants to do a couple more chemo treatments before a feeding tube is done. She is hoping for some shrinkage so perhaps he will be able to swallow. But he continues to lose weight. 50 pounds so far. On a good day he may get some soup down but that’s a hit and miss. He has no energy and Mayo stresses staying active. How is that possible with no energy? I’m worried but it doesn’t seem to be a priority. Oncologist says that having a feeding tube is a whole bunch of new problems.

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@cancersucks1953, good question. How does one stay active without any energy?

Sounds like staying active has to be redefined for your husband to fit within his current abilities. Staying active doesn't mean going to the gym. I would ask his symptom management nurse to help define what active might mean at this stage. Maybe it is simply doing little things (little to us, but activity for him), like getting up out of his comfy spot more often just to get the blood circulating or making circles with his feet and wiggling his toes. But with pain and no energy, activity just might not be the priority right now.

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Profile picture for bob5246 @bob5246

@bob5246
Hi, my husband Bob had surgery last December 2024. He also did not have chemotherapy or radiation before. However, he did get a J-tube because of an anastomotic leak and stricture. The doctor told him he had gotten all of the cancer, and he did not need chemo.
Fast forward, he was scheduled for a colonic interposition, a surgical procedure to replace the damaged esophagus that remained. Upon working him up for the surgery, they discovered he had metastasis to the liver, throat, and lymph nodes. He will start chemo and immunotherapy this Saturday and will be on it for what remains the rest of his life.
We honestly did not see this coming.

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@bob5246 It's hard to imagine a responsible surgeon making a statement like that based only on his gross examination during surgery. You never, ever know until the cytology comes back from the pathologists...

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I have an update. I've had my second dilation now and it's vastly improved my situation. I can eat almost anything now (carefully) and the spasms are pretty much gone. My throat will tighten slightly but not close and it pretty quickly relaxes on its on. Just a little upbeat for a change...

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Hi I had a j tube put in before my chemo treatments started. I couldn’t eat anything and very little liquids would go down. I had lost 45 lbs and needed to gain weight before surgery. The feeding tube helped me tremendously I gained 20 lbs before surgery. Most of my feedings were over night. Biggest part is to keep it flushed which I did before and after feedings and once more during the day. Never had any issues and definitely helped get my energy back and got me back to walking to get my stamina back also. Hope this helps wishing you the best. Scott

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