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What to do after radiation to get off the feeding tube asap

pk's picture
pk
Posts: 192
Joined: Aug 2009

Anyone out there who has a suggestion as to how to get back to eating after the radiation is over. My husband has 10 treatments left. He drinks water and can swallow some soft foods, but they taste so awful that he chooses not to very often. What can we do now to start preparing for the end of rad. and get him off this tube as soon as possible?

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Having been through this myself, my recommendation is to let nature take its course. Once his treatment ends he's going to continue to "cook" for three weeks or so -- kind of like a roast that you take out of the oven and let rest before you carve it.
If he has 10 treatments left, plus the three weeks before he stops cooking, he's likely to start getting worse and will need the PEG more than ever. It's important that he continue to swallow whatever he can, even though most things will taste bad or different from the way they tasted before. Just give it time and encourage him to continue swallowing what he can. If he can take in sufficient calories, he'll get the PEG out soon enough.
But don't rush it.
Good luck!

--Jim in Delaware
(almost one year out of treatment)

pk's picture
pk
Posts: 192
Joined: Aug 2009

Thank you for your words of wisdom. It is getting closer and closer to being over (the radiation that is) so you start to think about the future and getting back to some type of normalcy. Obviously patience is the way to go.
Phyllis in MN

mess17
Posts: 5
Joined: Sep 2009

I agree. My mom did not get a tube during radiation and even after she finished and started eating what she could, she continued to lose weight and vomit. Now she has a tube and is fighting to gain 15 lbs.

Some suggestions for high calorie, good nutrient foods are Carnation Instant Breakast "Very High Calorie" drink. 560 per 8 oz can and it tastes way better than Ensure. Also Benecalorie is 350 calories in about 1 oz of liquid that you can mix into anything in place of water (i.e. oatmeal, mashed potatoes, soup, etc.) No flavor but is does tend to thicken things up. Also, Boost makes a juice box with 250 calories, mix with some Sprite and you have a tasty spritzer. All are available online at JRS Medical.com with reasonable prices.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Thanks for your words of wisdom and ideas. We came home from rad #24 and an Erbitux drip. Bob wanted to taste some chicken chow mein so we stopped and picked up some take out. He ate a bit or rice with the chow mein at lunch and also had a little more tonight. I am so happy he is able to still swallow. He chooses Boost most of the time as most food tastes so terrible and is a struggle. He wants to keep eating a little each day if possible to hopefully allow a better outcome at the end with ridding himself of the tube. We'll see.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

PK,

My Husband has eight rads left. We had our last chemo yesterday. We have used the feeding tube some all along to keep nutrition up but he has also been eating and drinking by mouth all along too. He wants the tube out ASAP too, he hates it even though he knows it has been a life saver. Last night he ate two bowls of potato soup and the night before had fish. So I think it really will be up to them. I hope they both get them out as soon as they can because I know it is frustrating. Good Luck! Donna

pk's picture
pk
Posts: 192
Joined: Aug 2009

Carolinafgirl,
Thank you for your post. My hub. is doing so well. We met with the oncologist today and he is amazed at how he has tolerated and managed this treatment. Sounds like your guy as done well also. Food is the issue - nothing tastes very good and is a turn off. But we keep trying something everyday. We love to spend a couple of winter months on St. Simons Is, GA in the winter. Being from MN it is an awesome break. Out goal is to get this behind us and enjoy St. Simons.

Don't forget to hangout with your girlfriends!!!!
PK

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

I would add, or perhaps say in a slightly different way, that you should not overlook the second most important reason for the PEG tube which is hydration. Nutrition is key of course but hydration perhaps equally so.

I assume whoever placed the PEG connected your husband to a nutritionist. Mine provided a calculation of minimum caloric intake per day in order to maintain a given, healthy weight. I kept a log religously of caloric intake and lost very little weight over the course of 35 IMRT treatments and 7 Cisplatin treatements.

As for taste, in my case it was the Cisplatin that was the culprit. As others have stated here, the radiation will continue to "cook" for 3-6 weeks beyond the last treatment, but in my case my taste began to improve, albeit very very slowly, when the chemo stopped at the beginning of week 7 of IMRT. Again, very slight improvement, but noticeable. So, yes, prepare for the side-effects of radiation to continue for several weeks but don't give up on taste. And, the fact that he has forced himself to contiue working the swallow-mechanism is a huge factor in his favor. Too many patients give up on swallowing toward the end of treatments and ultimately have to endure OT to re-train the swallow-mechanism.

Back to hydration, in my case once treatments ended hydration was my biggest problem. I had to push 80-100 oz./day even for about 60 days after treatments just to stay ahead of dehydration. Even at that I had to have weekly IV for hydrates for about 3 weeks post-treatments. One trick that helped me was that I switched to a 50-50 mix of Pedialyte and water. The extra electolytes really helped. For this, I also kept a strict log of intake. Again, don't overlook the importance of hydration as it greatly affects the body's ability to heal and rebound from the very harsh treatments your husband is enduring.

Hope this helps................and God bless you for being there for him. He is a lucky man. I would not be here to tell you this had it not been for the large role my wife played in my treatments and recovery now almost years ago.

JK

lstricker
Posts: 4
Joined: Sep 2009

I am recovering from Tongue cancer. I can swallow liquids just fine. My doctors told me to start eating as much as i can by mouth. I have been trying everything i can think off... but it all taste so bad it almost makes me sick. Yougart is about the only thing i can handle.

i guess my question is how long before my taste actuall comes back. Last treatment was May 30th 09'. Its beem three months now ?

thanks LLS

Nidociv's picture
Nidociv
Posts: 10
Joined: Sep 2009

Hello LLS,

I too am recovering from Tongue Cancer. My last chemo and radiation treatment was Oct 30,08 almost a year out and I am still using my PEG. I know everyone is different but I lost my ability to eat anything very early in treatment. About 1 1/2 months ago I started being able to get soft things down like mashed potatoes and gravy, puddings, ice cream, etc. I have been able to drink almost any liquid since May. I am also taking Vital Stim Therapy to help with my swallowing muscles. In the last couple weeks I have been able to get down some new things in small pieces such as some brownies, oatmeal, small bits of pizza with no crust--all with lots of water. My ENT told me last week thats its a slow process because of my salivary glands being fried and my throat being so dry for anything to slide down. But the good news is they are slowly coming back. In just the last couple weeks i can feel an great difference in my mouth and throat, so much wetter. No more waking up with my tongue stuck to the roof of my mouth and my throat dryness is only a portion of what it was just a couple weeks ago. So like I said everyone is different in healing but this is how its been for me. Its a long haul but its coming. Hope I helped a little with your question and wish you all the best. Randy in Ohio

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