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Joined: Feb 2008
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Hi there, fellow food-lovers and calorie monsters!!! Happy Leap Day! I'm really enjoying our discussion and am getting good ideas from you all. I forgot to mention what is maybe THE most nutritious, calorie-rich, GOOD-fatty food: avocado! My sisters convinced me that it's the magic food of the universe, so I started making mild quacamole with it (mash it up, add sour cream and salt, and garlic if you can tolerate it). Of course if you like it, just eat it plain. For you, Debz, I thought it would be useful because it's very slippery so won't be sticky like cheese is. It's easy for the rest of the family to add stuff (lemon or lime, hot sauce, onions, etc.) to theirs after I take mine out of the bowl. I would just eat it with a spoon before I could manage bread or tortillas. Very satisfying, too. Nice texture. SOOO .... Happy eating, and I hope you enjoy every calorie! Good night for now (it's almost 9:30 for me), and take care. You are in my prayers every day.


Non-smoker non-drinker, 50 when diagnosed 9/11/06 stage IV scc of oropharnyx, malignant lymph nodes both sides of neck. Cause=HPV16. Daily chemo & daily IMRT for 7 weeks. In 2 clinical trials at Johns Hopkins, good results. Peg tube out March 07. Update September 2014: gratefully in good health!
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Hi guys - I have been reading your posts to get ideas as my husband starts his treatment next week. I want to have several items on hand for him to try as he starts having the side effects. One item though that I thought some of you might enjoy is frozen mac & cheese with little bits of smoked ham. The reason I know about it is for my toddler. I buy it at Wal-mart frozen section and it's in a single serve box - mac & cheese with ham. It's a pretty "wet" mac & cheese and the ham is tiny. The flavor is really good, it doesn't have a salty flavor, but there is salt in it of course because of the ham. The brand is Michelina's and it's like $1 per box. Good luck to you all and your information is so helpful. I think I will have a prepared pantry for my husband. Of course I'm only going to get like one of each thing, until I see what he likes and how he handles specific things.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Michelle,

This is really difficult to try to understand unless you have experienced it but forget what anything tastes like, good or bad, because that's not really going to be a factor in whether he eats something or not. In a very short time nothing will taste the same and some things will flat out taste horrible. It is quite demoralizing to experience and I used to keep trying different things that I used to love only to be kicked in the head when I put it in my mouth. He will soon just need to focus on maximizing daily caloric intake however he can. That's why I stuck with the CIB VHC because it was the quickest and easiest way to achieve that goal without dealing about the taste issue.


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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David,

You are so on target. At least from our experience. Dan would crave foods and I would make everything he craved...sometimes I'd try 3 or 4 dishes at a time. And, one bite, or partial bite, and he and I would both be discouraged. But, that didn't really happen until about week 4 of treatment, so hopefully Michelle's hubby will be able to eat and enjoy for awhile.

When the going got really tough, Dan couldn't even handle the VHC for weeks as it was too thick and by the time he thinned it down enough it was 16-20 ounces instead of 8. So, he stuck with the Ensure Plus.

Michelle, not trying to discourage you, but if I had to do it all over again, I'd have not tried so hard to push food vs. calories. I threw so much food away. And, Dan got so discouraged each time he couldn't eat something I made.

I think some people are able to eat all the way through treatment, but it's a difficult scenario to plan for. You almost have to take that one day by day and the only thing I would do is have some liquid protein supplements in reserve. I'd have a variety. Dan couldn't tolerate Boost, but he liked Ensure. Some people love Boost. Many people, like David, lived on VHC.

Dan wanted variety, and I tried to provide that even with the Ensure. But, ultimately, the only flavor that he could tolerate was vanilla. When he and I finally accepted that fact, things got easier...and, it wasn't such a craze-fest at the super market or in the kitchen anymore.

It was not a fun time, because as the caregiver I couldn't understand when the issue was how "wet" something was or whether it was taste or texture. And, Dan had a hard time articulating why things didn't work. I still can't say I understand it. When things like ice cream or popsicles "burn" instead of "soothe"...well, it's just hard to understand unless you are the person experiencing it.

But, on a great note, there is very little Dan can't eat now. And, lucky dog, he gets to eat all he wants without gaining an ounce. It's a small reward for the grueling summer he went through. But, he's finding great joy in eating again.

The other thing we were advised to do was put in as many calories as we could before things got tough...so no skim milk or "lite" anything. It was a huge shift for our health and calorie conscious home.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Yes, I think that's the key is to use those first couple of weeks before the sense of taste bites the dust to eat as much and as much high calorie food as he can. David is right about flavor really becoming and issue that can't be understood unless it's you once radiation does its thing to your tastebuds. This seems to be especialy true for what tastes salty. Many of us found our taste buds really sensitive to salt as we began to recover. I liked things with a little bit of salt because the salty taste was better than nothing BUT some things that didn't taste salty before tasted overwhelmingly salty to me.

You just have to be prepared to experiment but espeially to recognize that the main issue after a while becomes calories, and, if he doesn't have a tube and needs to get those calories orally, finding something that is easy to swallow and doesn't burn the mouth (and Margaret, like your husband, I found that very sugary things did feel like they burned and actually still do to a lesser extent, though my experience with it remaining that way is rare--apparently radiation threw my nerves enough off kilter that my mouth has remained very sensitive to some things). The list of those things may get smaller and smaller as radiation goes on. But he will recover eventually. Just keep pushing nutrition even when it gets hard for him.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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One of the most frustrating things we all deal with is our mind still tells us that if we eat that hamburger or seafood or steak or mashed potatoes or pizza or gatoraid or OJ or whatever that it will taste just like it always did so we get up the courage and tell our spouse/caregiver...get me some and we put it in our watering mouth and WHAM it tastes horrible. It's really hard to get past that feeling and we have never eaten anything in our lives that didn't taste good to us so we push it back and say maybe I'll try something different next time, I'm sure it will taste alright but alas it doesn't either.

Remember we can all react somewhat differently to these Tx's but a very large % of us had pretty much the same reactions to our Rad. Margaret said Dan started loosing his taste at 4 weeks, mine started going bad after 2 weeks and a few said they noticed changes after only a few. I hope he never notices what I have described but if he does, he's just normal and that's equally important to reinforce to him.


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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Thank you guys so much for sharing that deep with me. It helps to have insight and I am taking all of your suggestions to heart. I just cannot imagine how he will feel and I want to do anything/everything I can to help.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Posts: 214
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Michelle--what kept me on target with eating was the thought that I was not eating for pleasure, I was eating for survival. My analogy was that of putting gas in my car to keep it running; I was doing the same thing for my body. So what If it tasted horrible---it was the fuel that kept me going. I thought this over and over again throughout the day. Also, My caregiver tracked calories and fluid throughout the day. I had to get the minimum amount in everyday before I could go to bed. I was forunate enough to be able to keep my weightloss minimal. Wishing you the best of luck! Teresa


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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Amen Teresa,

As a caregiver, I had tunnel vision about getting to the end of the day with the optimal fluids and calories consumed....nothing else seems as important. I always felt like a failure if, that day, I had failed to keep Bill on track. It was hard...he never felt like eating so I just had to watch the clock and every three hours or so get those cans and water out. It was like having a newborn in the house...he depended on me to keep him alive! But, the results are worth it and you reach the end of treatment with the best chance to recover.

Deb



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Aw your all so amazing, and i agree with all you have said, i think after everything is done trying to deal with the taste issues after treatment is one of the worst things, it has been for me, i was actually getting depressed and im always so positive but like David said your brain telling you you want something that you used to be able to eat and enjoy then finding its nothing like it used to be was the worst thing. It does and will get better but its very hard and frustrating for both of you...we will be here though

Debz


Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
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