Everything Burns - week 5 of treatment- suggestions?

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Everything Burns - week 5 of treatment- suggestions?

by sarammartin on Tue Apr 30, 2013 10:45 PM

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Hi,

My husband has base of toung stage 4 cancer.  Doing a total of 35 radiations and 3 chemos. 

We are starting week 5 and he says everything tastes burning in his mouth, except for Orgain (like Boost but Organic ,255 cals.)

He lost 7 pounds in a week.  And is getting anoyed at me for suggesting things to try, since it all burns.  He is on Oxy 40, and Nuronton... He HATES the magic mouth wash. 

Any not burny suggestions out there?  I feel bad I can't fix this. 

Sara

RE: Everything Burns - week 5 of treatment- suggestions?

by Oudave83 on Wed May 01, 2013 01:00 AM

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That's why feeding tubes are encouraged...just keep drinking the highest calorie drinks like boast u can find and afford like at walmarts or SAMs club....grind it out and keep the faith..the weight will come back. later....u r in my prayers..faith hope and trust.......fight hard. Oudave. Ps. Uluru can do this together...believe....

RE: Everything Burns - week 5 of treatment- suggestions?

by sarammartin on Wed May 01, 2013 01:23 PM

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Thank you.  I've been feeling like an imperfect wife/helper...things change so fast!  We are going to meet and talk about a ftube today, or at least start talking about it.

Sara

RE: Everything Burns - week 5 of treatment- suggestions?

by adamschesley on Wed May 01, 2013 07:07 PM

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I too went through 35 radiation treatments with once a week Chemo. My mouth sores and sore throat made it had for me to swallow and it sometimes took me 40 minutes to finish a boost. I lost 28 pounds total but never had a feeding tube placed. I lived on Boost+ (360 calories). If he is having trouble swallowing I recommend that whatever he does swallow has the highest calorie content possible. You can always go back to organic after he gets better. One trick that helped me was to take a pain killer 45 minutes before attempting to feed. Then when I started the first couple of swallows were still painfull, so I'd wait a few minutes then take a few more swallows, which always were less painfull. Seems like the first swallow is always the worst. If he can put down 5 or 6 Boost+ (or equivalent ) a day he should be able to maintain his weight. At least enough to get through the treatments. If Orgain is the only thing he can tolerate, then he may just have to drink 7 or 8. It gets very tough, but keep the end in sight-it will come! I started feeling better about two weeks post last radiation treatment and by week three was feeling good again. I wish the best for you two ! God Bless and hang in there!!!!!!

RE: Everything Burns - week 5 of treatment- suggestions?

by Hopetorun on Wed May 01, 2013 11:47 PM

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I had SCC in my left tonsil and my lymph nodes on left side of neck.  I had 4 chemos and 35 blasts of radiation with 8 Erbitux infusions (to increase effectiveness of radiation).   My docs had me get a ftube just a few weeks into radiation as they knew food would taste terrible and would be hard to eat and swallow.  So for sure see what your docs think about the tube.  But anything cool and moist sounds best for your husband.  Don't worry about healthiness of the diet, he needs calories, calories to fight the effects of the radiation and keep the weight up.  Any flavor ice cream is good (our oncology nurse's husband had same cancer, lived on gallons of vanilla ice cream for months).  Other ideas are plain or flavored yogurts, make your own milk shakes with his favorite ice cream, bland fruits such as bananas, and protein powder is good too for calories (use whey protein powder).  Some soups are also good, creamy with no lumps of meat or potato in them (cream of broccoli, celery or cauliflower).  Scrambled eggs  are good as are moist pastas like mac and cheese or fettucini al fredo.

He needs to be patient as everyone responds differently to the treatment, and everyone recovers at different speeds.  Hope for the best, expect the worst.   I was pretty bad for 2 months after end of radiation, started feeling better in 3rd month and after removing the feeding tube after 4 months, made steady progress toward feeling like a normal human. 

I'm just over 1 1/2 years out of treatment and feel quite well.  I have no saliva, but have learned to work around that.  I am very close to the way I was before cancer, but realize there is a "new normal" and am happy with that.

Good luck and hang in there.  There were days and days I'd say to myself "when are you going to feel better?" and it may take a while, but you (your husband) will come out the other side of these difficult times!

Jeff Thompson

RE: Everything Burns - week 5 of treatment- suggestions?

by Sdurnell on Sat May 04, 2013 07:02 PM

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Sara,

I want to second the idea that he needs calories.  I'd try to find a  higher-calorie drink if that is all he can do.  

What about vanilla ice cream?  Or add heavy or whipping cream or some kind of oil to the formula he is getting.  

People can do this without a feeding tube, but nearly all will tell you it's very hard, and it's no shame if you need one.  It can literally be life-saving, as it was for me, and the procedure itself is not a big deal, even in the middle of treatment, which is when I got mine.

Talk to people where he is getting radiation about possibilities.  

All the best to you and your husband.  And hang in there;  I know it's very tough for caregivers as well.

Susan

RE: Everything Burns - week 5 of treatment- suggestions?

by sarammartin on Sat May 04, 2013 07:17 PM

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Thank you Susan,

He is feeling better now...thinking he will hold off and may not need tube.  I think he was not taking his pain med consistanatly enough, so at time to eat/drink... it was too much.

We also got hydration twice this week and i think it helped... Ordered some boost plus... and he is sucking it down. 

Im happy either way, just so so has enough to fight the fight.  2 more weeks or Radiation and one Chemo left...

I do find myself sneaking/eating when he goes to bed or in the other room, I don't want to eat in front of him, he is so missing real food/food taste!! 

Sara

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