What was your experience immediately following RT/chemo?

Posted by Lynn @cometsmom, Jun 14 7:26am

My husband Jeff completed 6 weeks of RT/chemo on Friday. He was told the first few weeks could be the most difficult of all and so far, things have been pretty rough. He was not able to eat anything at all for the last 4 days and yesterday couldn't even get Ensure to go down. He was admitted to the hospital and the plan is to try an endoscopy this morning. The GI doctor is not sure they'll be able to pass the scope. He's getting the feeding tube back in. He said it could be inflammation from the radiation or tumor obstructing. Jeff has lost 10 pounds in the past week and looks awful, gray and exhausted. He's sleeping almost all of the time. I'm anxiously awaiting the results. Has anyone had a similar experience after completing treatment? What was the outcome? Thanks for your input.

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

jmreed1958 | @jmreed1958 | Jul 13 10:49am

In reply to @jmreed1958 "Prayers for yall" + (show)

just finished 2nd round of chemo. swallowing a bit better. so far, it's not been that bad, just weak and wobbly. everybody hang in there better days are coming

Don Higgins, Volunteer Mentor | @dsh33782 | Jul 13 11:03am

In reply to @jayb1123 "My experience with radiation & chemotherapy was basically loss of appetite for most foods although due..." + (show)

Jay
I could only sip liquids due to tumor, but after 3rd chemo treatment, the tumor in lower esophagus had shrunk 40% and I could start to swallow again. But I ended up on feeding tube for a while during chemo and radiation as I did not want to eat. Let us know how it goes?
Don

jayb1123 | @jayb1123 | Jul 13 11:22am

In reply to @dsh33782 "Jay I could only sip liquids due to tumor, but after 3rd chemo treatment, the tumor..." + (show)

So in April I had the Iver Lewis procedure and at the time a J tube was placed as I was unable to eat due to the surgery.
Just yesterday the J tube was removed and my eating is getting better although I occasionally have some issues swallowing but the food eventually does go down. Just need to eat slower and smaller meals.
Most likely will need to get my esophagus dilated soon.

Don Higgins, Volunteer Mentor | @dsh33782 | Jul 13 11:56am

In reply to @jayb1123 "So in April I had the Iver Lewis procedure and at the time a J tube..." + (show)

Jay
Glad the J tube is gone and you can eat more. I have scans every 6 months or so and I've had several endoscopies and oblations to remove some precancer cells still showing up in lower esophagus. But the scans are clear and lymph nodes are quiet. The original discovery of my turmor in lower esophagus was due to planned dilation to improve my swallowing. Let us know how the next endoscopy goes?
Don

relicmeister | @rselicmeister | Jul 14 9:57am

I finished my radiation monday, June 8 and had round 2 chemo Wed10th -Fri 12th. Between them had pretty nasty side effects like weakness, nausea, burning esophagitis and pain. Today Sun 14th feeling better able to swallow a little liquid. Now looking for any signs of less pain ( due to palliative radiation) and increasing ability to swallow ( due to chemo) though it’s still early in treatment. Good news is my cancer has TWO mutations that respond well to targeted immunotherapy which will start a week from this coming Wednesday assuming my insurance gives approval ( and they better!!!!!!!!!) had originally planned to return to work tomorrow, but that’s not happening-going to do what I can part time and have a variable schedule/ part work paid, part disability paid which I found out can be done. So that’s where I’m at in my adventure.

relicmeister | @rselicmeister | Jul 17 11:48pm

I’m having difficulty getting enough calories thru my g tube due to increased nausea ( due to chemo) I’m supposed to take 6 cartons of jevity every 24 hours but really get 4+. Haven’t had any food by mouth ( even pureed) in about 6 weeks. My normal weight ( I’m may)was 135 lbs. but yesterday I was weighed at 115. Due to 10 sessions of radiation I have esophagitis and can’t even swallow liquid. Doc says this is the hardest period for me and I should see improvement after next chemo round ( will be my 3rd). My wife thinks my nausea and aversion to feedings is intentional which isn’t true but she also thinks my pain complaints are bogus and this saddens me. Going back to work tomorrow on highly flexible schedule as I’m on short term disability- my doc doesn’t agree but is permitting it. I’m not sure how it’ll work out but I’m giving it a try. Really looking forward to the two immunotherapy drugs that will be added next round - they could make all the difference.

So suffering is now a daily part of life and if I wasn’t a faithful Christian, I think I’d be living in darkness much of the time.

Lynn | @cometsmom | Jul 18 4:46am

In reply to @rselicmeister "I’m having difficulty getting enough calories thru my g tube due to increased nausea ( due..." + (show)

Hang in there, the esophagitis is slow to improve but will get better. ❤️‍🩹 Someone here suggested phenergan suppositories for the nausea if you're not finding you can tolerate the pills for it. That too might help with being able to tolerate the tube feeds. So important to keep your strength up especially if you're going to try to return to work. You're in my prayers!

mrgvw | @mrgvw | Jul 18 6:20am

In reply to @rselicmeister "I’m having difficulty getting enough calories thru my g tube due to increased nausea ( due..." + (show)

Do you have a G tube... or a J tube? If you are heading to surgery I will assume you have a J tube.

Yes, dark times right now... but hang tough... the chemoradiation will do its job... and a couple of weeks after treatments stop, taste buds come back, sore throat improves greatly, etc. Scan will show you are ready for surgery.
Two immunotherapies... to be added in now? What stage are you? Are we talking Keytruda, Herceptin, Ramucirumab, Opdivo? Which ones? And while they could cause you no issues... they just might.

You have my number... give me a call.

Gary

relicmeister | @rselicmeister | Jul 18 6:57pm

In reply to @cometsmom "Hang in there, the esophagitis is slow to improve but will get better. ❤️‍🩹 Someone here..." + (show)

Thank you for your suggestions- I’ll ask my doc to prescribe the phen supp’s

relicmeister | @rselicmeister | Jul 18 7:07pm

In reply to @mrgvw "Do you have a G tube... or a J tube? If you are heading to surgery..." + (show)

Hi Gary, I have stage 4 Mets to spine , small liver spots and chest nodes. Type is adenocarcinoma. Surgery is off the table. I have a g tube because my stomach isn’t involved and surgeon said he’s not saving it for pseudo esophagus. The esophagitis, says the oncologist, is a. result of the 10 radiation sessions I just completed in hopes of achieving pain control (which it has not - no improvement although peak results are expected to manifest about a month after radiation ends.) IDK what the drugs that attack two separate mutations are, but they should be giving me them during 3rd chemo infusion week. The oncologist believes they will be game changing, and I’m anxious to start taking them.