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My husband did really well with scandishakes (order online but high number of calories and great taste similar to carnation VHC)and he would add ice cream and fresh fruit. Sweet things tasted best to him although he craved hamburgers and steaks. He often tried small amounts of several things as it was less discouraging if he could find at least one thing that he could eat and that might actually taste ok. Omelettes worked well as did pancakes and french toast covered in real maple syrup and blueberries.


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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I guess some of the responses are confusing to me because his speech therapist is PUSHING about the food consumption. She has been pushing all along through his treatment, and she wants him to eat things like chicken and dumplings (which I DON'T think he could possibly do.) But because of her adamant insistence that he should be eating, I have been very concerned. It sounds to me like most agree that this is not so vital right now. Thanks for such great responses. I hope to see more comments, especially about the picky aspect of it all.


Karen...caregiver to husband, 49 yr. former smoker quit 6/14/09.
DIAGNOSIS: 6/15/09, SCC BOT prim., + R neck lymph nodes--HPV neg/P16 pos
PEG IN: 8/13/09, OUT: ?
TREATMENT START: 8/18/09 cisplatin x1, then carboplatin/taxol x5 + 35 rad
TREATMENT END: 10/7/09
FOLLOWUP: after Thanksgiving 09
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Karen, I think it's all trial and error. I know they want you to keep swallowing but he can probably only manage smoothies, cream of wheat, yogurts at this point. if he does chicken he will need a sauce on it or it will get stuck in there. I think I pureed chicken pie in my Magic Bullet and he ate that for a few weeks. I ate it too. It looks awful but it tasted good ( he couldn't taste it though) My husband still caN'T TASTe much after a year and this greatly impacts his eating. he can taste sweets so he eats chocolate all day.
Even if he can just drink water/juices right now, that will keep his muscles working.
Good luck, it never ends does it?


caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
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Chicken is one of the driest meats out there. That's the last thing I would ask him to try, gravy or not!

I was anxious to eat REAL food post Tx and as soon as I walked out of my tunnel I asked my wife to get me some mac n cheese and some mashed potatoes with gravy from KFC. I couldn't wait for her to come home!!! I ate a few bites, didn't taste much but it was so rewarding to finally be able to at least try. I also found fruit cocktail easy to swallow but again it didn't taste like much.

I kept trying different things but they all had to have some sort of lubricant, like ham steaks (moist meat) with apple gravy; Pot Pies; pancakes with a sunny side up egg and syrup; TV dinners; soups with stuff in them, etc. The thing is to just keep trying until he finds something that he can tolerate until things improve which they will. I saw my first real taste and saliva improvement at 4 months post Tx.


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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Chicken and Dumplings at 3 weeks out? Is she nuts? I'm 11 years out and I doubt I could get that down now. Granted he will need foods with lots of sauce and gravies which is why Thanksgiving is a good choice, lots of different things to try. Take very small portions and eat what works. For me I think it was turkey with gravy, mashed, cranberry sauce, apple sauce, pie with no crust all washed down with lots of water and milk. I was 4 weeks out and it was Christmas.

I had no peg so lived on Ensure Plus for about 4 weeks and ate some to supplement that. I ate cream of wheat with honey and lots of butter and hot milk, french toast with lots of maple syrup and butter, scrambled and poached eggs, home made cream soups, rare lamb chops with mint jelly, rare steak with crisp green salad with blue cheese dressing, lobster with lots of butter. Took hours to get any meal down so read a magazine while eating. Everything needs to be cut to tiny pieces.

If he is drinking his water and maybe getting some juice down, he is exercising the swallowing muscles. Maybe he can drink some of the stuff he is using in the Peg. Watch for trismus also. That sneaks up on some people.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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the speech therapist is probably concerned about retaining the ability to swallow more than liquids or cream of wheat consistency. I;m with DavidCPA on not picking chicken though despite the therapists recommendation.
Getting used to food being a chore with no taste in the first year for many of us was a common experience. I found I could taste garlic, lemon/citrus, olive oil which helped me eat solid food pretty quickly. However I should disclose that from childhood on to adult, I was never a picky eater and if something did not crawl off my plate, it was eaten (not counting the blueclaw crabs that scrambled across my family's table trying to escape the pot of boiling water my mother had going in the narrow kitchen)
You could ask the speech therapist to give him swallowing exercises. But the best exercise is to actually eat the food.
If he waits for his taste to come back, it'll be too long


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Our RO's description of post-tx progress, which I thought was a very useful guide -
once patient could increase from liquids, other than water, (water is actually difficult as it is thin and therefore difficult to control):

If patient could not advance diet to a more challenging food texture each MONTH, RO wanted to be notified. As long as there was some advancement that was considered progress.

It took months for my husband to begin eating solid food and he did have to force himself to step up the diet gradually. Getting the PEG out was a big incentive. Waiting for taste to return is unrealistic as others have said.

An observation as a caregiver - In the beginning, presenting too much of any food overwhelmed him, so I gave him tiny portions. After awhile I noticed that he would never take more, even if he could tolerate the food. So I gradually started adding more food without asking him about it. He would finish but never take any more. Eating can be a very complex process as we've all unfortunately experienced. I'm thrilled to say that he can at least try most foods now and improvement is still occurring.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Karen,
I agree with everyone else...expecting him to try something like chicken and dumplings is just plain wrong! Meat of any kind is very difficult to swallow. Dana's found that he could tollerate small amounts of KFC dark meat with lots of gravy...and lobster with lots of butter, but he couldn't even try these things until about 6 weeks after treatment. He also ate quite a bit of Stouffers frozen Cream Dried Beef on very light toast. I heated it in a pan and added whole milk to it. He had trouble with anything over room temperature...or under room temperature! He would eat very small amounts. I would come home from the store with all kinds of things to try...and I still have most of it! He was a picky eater too, but last week, he discovered that he now likes aspargus and corn! The RO explained that the taste buds are like a baby's and they need to learn what they can eat all over again. Dana was told that he needed about 3000 calories /day for his body to recover from the treatments, so supplement, supplement, supplement. I promise that things will start looking up soon. His RO told him that at 4-6 weeks after the end of treatment, he would "get better faster" and he did! The odd thing with Dana is that he doesn't remember some of the worst parts...and I'm just now finding that out. Just the body's way of getting you through the awful part, I guess. Hang in there...and come here often. Everyone here is so nice and they know so much about how to deal with this awful disease.
Diane


Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09


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Karen, the Thanksgiving goal is a good one. I did the same thing, set goals and tried to accomplish them. I had finished my first round w/ rad/chemo the end of Sept. I made the same Thanksgiving goal but unfortunately I wasnt able to eat very well. I did enjoy the company of my family and the mashed potatoes.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I have found the Stouffer's frozen products to be easy to swallow. Specifically I eat the tuna noodle casserole, the turkey tettrizini, the spinach souflee and the corn pudding. I cook a lot of chicken and beef liver which I braise to make it soft and fish filets like tilapia and sole. I can even eat meat if it is very ground up. For instance, I made a bolognese sauce which had to cook for 4 hours. I also bought a Vita Mix and I can turn ANYTHING into a puree.

I finished treatments (37 RX, 7 carboplatin/taxotere) one year ago and never lost my taste.

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