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It's been about 5 weeks since I originally posted above (7 wks post tx) and Jim has started "eating" small amounts of soft foods. When I say small I mean SMALL, like it's an accomplishment for him to eat one tablespoon of pudding. He thinks he wants it but when I put it in front of him he will try one tiny bite then say he can't eat anymore. His throat is sore but not so sore that he can't swallow, so it is such a puzzle to me as to why he won't try to eat more. Here is this 6'3", former 215 lb. man who loved to eat any and everything, and now he's afraid to eat jello! It's like he has an aversion to food now.


Debbie, 53 wife and caregiver to Jim, 68, non-smoker, social drinks only. Stage IV SCC rt. tonsil. HPV+. Neck dissection 12/29/09. Peg inserted 2/2/10. Cisplatin and rad started 2/9/10. Carboplatin given 2nd round. 3rd round cancelled due to toxicity. Finished 30 rad treatments 3/23/10.
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Debbie:
I totally understand how Jim feels about food. It's been over 2 years since my treatments, and I still have virtually NO appetite; also the smell and thought of food is a turnoff. I eat, but force myself to because I know I have to. That is what Jim will have to start doing. He should get some of the VHC Carnation Instant Breakfast drinks that are loaded with calories and the cans are small and easy to get down with a straw, in order to maintain his weight, and other suggestions from others on the Forum of what to eat/drink (Check out in the Search box). I can imagine how it worries you to see him not eating, but he's just not hungry, and has no desire for food - in fact, if he's like me, it's a chore to eat. BUT, he needs to either eat or drink in order to survive and that's what it's about. Tell him he's not alone because there are a lot of others like us, but we do what we have to do.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Eating is something that gives us pleasure so when you remove the taste from eating and then add the dry mouth to an already unpleasant experience you really take eating to a chore level and therefore we don't look forward to eating anymore. Believe me without knowing what it feels like to not be able to taste one's food you just can't imagine how unfun eating can become.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Stangely enough but fortunately Jim can taste the little bit he's eating. The dryness is bad though and he says sometimes when he swallows, the food gets stuck about a third of the way down. Mentioned it yesterday at his appt. with the RO. She said he was right on course as far as eating goes. She advised to take a drink of water first, then a bite of food, then chase it with water. He had not been drinking water before taking a bite. We'll see if that helps. In the meantime, thanks for sharing. You helped me to know he is probably not developing a mental block towards eating. It just takes time.


Debbie, 53 wife and caregiver to Jim, 68, non-smoker, social drinks only. Stage IV SCC rt. tonsil. HPV+. Neck dissection 12/29/09. Peg inserted 2/2/10. Cisplatin and rad started 2/9/10. Carboplatin given 2nd round. 3rd round cancelled due to toxicity. Finished 30 rad treatments 3/23/10.
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Deb,

This recovery can take EVERY BIT of 2 years with the first year being the slowest so don't you and especially don't let him get discouraged.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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It took me over 1 1/2 to 2 years to start eating in a "new normal" way. I still supplement with ensure though because I cannot eat everything I did before and not as much.


Nine years out. New normal with limitations, but surviving and living life to the fullest.
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