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#122007 09-20-2010 11:25 PM
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SusanW Offline OP
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Dave finished his treatment in May and in many ways is healing beautifully.
However, his desire for and relationship to food is very different. He does have some taste but certainly not what it was.It seems harder for him to eat "normal " size portions.
It (thankfully) is no longer uncomfortable for him to eat(although he does get the mucous thing sometimes while he is eating). It just seems as if his appetite is way down and his portions are so small compared to what they used to be.
He is still using some ensure as a supplement to keep up the calorie intake he needs.
I was wondering if other people found themselves with a reduced appetite or just a different attitude towards food in general.
And if so, what helped to increase it.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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Susan - My son definitely had a much different attitude towards food and progress was very slow with different tastes developing at different times. It's been almost 4 years now since his end of Tx and he tells me that his taste is about 90% what it was BC. He did have 1/6 of his tongue removed and he said that for that particular portion, he does not have taste but he tells me now that each portion fo his tongue seems to be responsible for certain specific tastes. In the early recovery days, he could not eat very much each time so I tried to get him to eat more often and accompanied by lots of water. Since everyone is different, there is no guarantee that what someone else likes will be pleasing to a particular person. So if you buy something he thinks he might like, don't buy a lot of it. I remember buying a big container of protein powder to mix in with his milkshakes and with just a small taste of it, he said it tasted awful and would have none of it ever. He has, however, developed likes for things that he never used to like before he had cancer, like brussel sprouts which he never liked all through his growing up years. Now, he tells me he likes that even more than he likes Spinach (his former favorite)! So - the "new normal" that you hear about on this forum can be really good as well as new.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Susan,

Post Tx with poor taste and poor saliva and in a weakened state I too found eating a chore, who wouldn't. I too ate small portions but I also drank a can of Carnation Instant Breakfast VHC with each meal to make sure I was getting enough calories and the right kind because I found myself more attracted to "feel good" foods that were either sweet or fatty. During my long recovery, well over a year, I gradually regained my taste and saliva (now appx 90% pre Tx levels) and I regained some weight and shed the weakness and as I did my eating habits returned as well.

Bottom line....he's normal and give him time to slowly recover.


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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Susan, David is right, it takes a lot of time. I am one yeear post tx. it did take about 2 months before I could eat, They all I could eat was eggs and hamburgers, as Davis calles them feel good foods. I also took ensure plus every day and tapioca pudding. I waited about 6 months then I started taking weight lifters supliments. Anyway mi diet stunk! I might have cured the cancer but was on the wau to a heart blockage!. The path back to a good diet has been long( and i am not there yet!)Give your hubby lots of time, this is a long and tough trail!
Steve


70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now

Just way glad to be seeing the green side up!




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Hi Susan,
Glad to hear that Dave is doing so well. In answer to your questions, I think time will be your friend on this one. Gordon has had pretty much the same experience and finished treatment around the same time as Dave.
He has to drink a sip of water with each bite of food and his portions are much smaller than they used to be (and this was a guy who was a *big* eater). Nothing he used to like tastes good anymore, and he gets bored with a particular dish very quickly. We're able to eat out (mostly Japanese or Greek right now), but he gets bored with that too. He's developed a taste for anything deep-fried, like fish and chips, kalimari, tempura etc. Definitely the way to a heart attack, but at least he's eating. We try not to have stuff like this at home, where he's getting rice, protein and vegetables. He's also developed a sweet tooth and has tried a few things on his own but luckily not a lot. Food has always been a great source of pleasure for him, but now it's just a chore. I think everything will "normalize" eventually, but never be exactly the same. I'm still pushing one "milkshake" a day, just to keep up the calories and nutrients, but he's starting to find them overly sweet, so I don't know how long that will go on.
What seems to work one day won't necessarily work the next. Just be patient and "go with the flow", because things may be in flux for quite awhile.
Anne, who is a fine one to talk about being patient!


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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I still have eating issues. I certainly don't enjoy eating the way I used to, but I am thrilled when I find something that I can taste and can eat. I eat very slowly, and certain foods don't work at all. Chocolate doesn't taste as good to me (bummer!)and I really miss "crunchy" things. I discovered Tyson's frozen chicken wings: the tequila/lime flavor. They aren't as spicy as the regular buffalo wings, but they have some flavor. I can also eat most seafood as long as it isn't heavily breaded. I still drink a couple of Ensures a day to make sure I am getting the calories and nutrition I need.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Flavors of foods are not as intense for me now. I can taste but not as strongly. I eat because I know I have to but it's not as enjoyable as before. Alot of foods are just not worth the effort. I stay away from bread products because they just get stuck in my mouth. Tangy foods (pickles etc.) are extremely tangy and tart and spicy foods are extremely spicy. It takes me longer to eat. I still drink Carnation Instant Breakfast every morning to help get the nutrients I need. I have gained back some weight - I did not have any type of feeding tube and only lost 9 pounds through my treatment period. To sum it all up, my eating habits have changed.


SCC on right tongue T2N1M0 Non-smoker, non-drinker age 55 female. Partial glossectomy April 2009,July 2009, Jan. 2011, lymph nodes removed, radiation & chemo 2009
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Susan,

I notice that most of my taste has returned but I loose it through the meal (EZJim said the same thing). I often put part of my meal aside and heat it up later. I went to dinner with my son tonight and brought half the meal home. I�ll warm it up later tonight

Some things have changed. I used to love pineapple, now it�s too tart. On the other hand I hated tomatos, now I love them. As I said to my brother lately,� every meal is an adventure�. I�m trying all kinds of things I never liked to see if I like them now, I�m finding a few that I do so it�s not all bad.

I have learned to lower my expectations with food and then can enjoy the nice surprises when they come.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Susan, all of these experiences are valuable teachers. Mine is similar to many. The fact that half of my tongue was left numb from my neck dissection and the sensation - and therefore the taste buds - there hasn't returned doesn't help my enthusiasm for eating. But I do it. Hang in there, both of you. Things will definitely improve with time!

David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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My experience is much like most. It takes quite a while to get a meal down, and I just plain loose interest in the process. However, I do recognize the importance of eating, so I make sure I eat three times a day - regardless of if I feel like it or not. I have noted that I just never feel hungry.


DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
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