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JGD99 Offline OP
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I am quite fortunate that I am able to eat most things still (even if I don't care to). Almost all taste is gone, and the few isolated tastes left seem strange when removed from their seasonings. A few weeks ago, I could taste raw cabbage in my coleslaw, but not the mayo, carrot and raisins, so it just tasted odd.

Now the big challenge is finding food I can eat without being disgusted. Did anyone find any foods less objectionable during this no-palate phase? I can plow through breakfast OK most days, but lunch & dinner are a challenge. Salad was a trial- ugh.

I do get an occasional "popcorn hull stuck on the back of tongue" feeling (with no popcorn consumed), and this can be a trigger to throwing up. Last night, I got an ibuprofen gelcap stuck on the fork in my throat, and lost most of my carefully consumed dinner in the wake of that.

Thanks all,
John D.


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
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Posts: 286
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Hi John. As long as you can get the calories in, don't panic about foods. Experimenting is good, and the best place to experiment is a buffet, where you can try small amounts of different things.

I found processed food easier to eat. Something like a hot dog, or KFC potato and gravy, tastes the same every time you've ever eaten one. It smells right, looks right, so sometimes your brain can override your taste buds and say no, this is not off its ok to eat.

When you say plow through breakfast, do you mean cereal? I was able to eat porridge ok, and it became a staple. But I wasn't eating any proteins, and became anaemic. Right now all calories are good calories, but be conscious of the overall nutrition picture.

The swallowing difficulties you describe are common and will improve over time. Keep a bottle of water with you all the time. You can try a lightly sparkling water too, that can help break up mucousy gunk in the mouth.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Jun 2014
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JGD99 Offline OP
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Thanks, Dave.

Yes, breakfast is full fat cream in coffee, plus whole milk in shredded wheat & higher fat granola. I have diverticulitis, and do not want a flare during this, so fiber is good to ward it off. My wife is on my case about the protein, though eggs are not of interest now. I did manage a ground turkey casserole for lunch yesterday, and a few bites of a chicken dish, rice and veg last night for dinner.

For a guy who was at best 20-30 pounds over my "ideal" weight for my adult life (when I wasn't 50 pounds over it), it's such an irony to be doing shakes of full fat ice cream, full fat creamer, full fat milk and I can't taste any of it.

I started treatment plumping up 194 or so (from my pre-treatment regular weight of about 189) and finished treatment about 184 on Monday. Now I'm about 178, and will try to put a bit back on for the next week or so.

BTW, my white blood count was pretty good after the second chemo treatment, so I expect my immune system is not totally shot.


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
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Posts: 286
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Certainly nothing wrong with complex carbs and fibre. Just be aware of what is missing from your normal diet. You run the risk of missing certain vitamins minerals and other nutrients if you fill up on a particularly narrow number of foods. Liquid iron and supplements can be helpful, but nothing beats a balanced diet, especially now.

An EXTREMELY common trap (me too) is "I can afford to lose a few pounds I'll pick it back up later." It doesn't work that way. There is a lot of repair work going on behind the scenes, and if you don't have the fuel you will make your recovery longer and more difficult. Its not easy when everything tastes bad but you have to find a way to win that battle in your head and get the nutrition in. Stick with it you're doing great for this stage.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Your progress sounds excellent. Just need to find things that are more pleasant to get down the gullet. To increase protein, try getting some whey protein powder and making shakes. You can add different things to it to give a different taste. Peanut butter gives a flavor when mixed in.

What seems more important to you is getting the variety rather than the heavy need to gain weight. You did not lose much at all so gaining weight will come along on its own due course. Just make sure you are getting enough of the basic food groups and plenty of water/liquid.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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JGD99 Offline OP
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My RO says he wants me to keep the weight for two weeks after treatment, then "I don't care how much you lose". That's fine by me, as one side benefit will be attaining the appropriate weight for my height, if only while I can't taste anything. I expect I will easily slip to 170-175 just eating as I wish, but will continue to augment my diet while in healing mode (i.e. the two weeks after).


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
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Posts: 10,507
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I know how hard it is to push yourself to take in enough. Every single day until you hot the first year post rads, by taking in at least 2500 calories and 48-64 oz of water you will do better. After going thru so much your body will have to rebuild itself. Normal calories arent enough. I see where your doc is coming from but by continuing to push to hit the 2500 calories daily, it will only help you get better faster. Please do the best you can to maintain this pace with your intake.

Alot of eating right now is about the texture of the foods. Try canned sliced peaches. The syrup helps them to slide right down. I also was a fan of cold chocolate milk (400 calories/pint) to help soothe my sore throat.

Easy to Eat Foods list


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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Posts: 38
JGD99 Offline OP
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Hi Christine,

Thanks for your thoughts and the food list. I actually had wonton soup last night; I've found it does retain some taste, and is easy to take in. Many of the foods on your list, though easy to swallow, are not very appetizing now (yogurt tastes like chalk; maple syrup has no sweetness, etc.).

I got through the treatment in a fairly healthy state: I had a strong white blood cell count after two doses of chemo, and kept most of the weight. Less than a week and my external radiation dermatitis (i.e. burns) have receded on one side to where they don't need cream, and my need for pain meds is receding as well. I know the damage internally is much bigger than what I can see. I will be seeing both my cancer docs and my regular physician in the weeks ahead, and my body is about 180 pounds now, down from my "fattened up" starting weight of 194. Dropping to 175 would be less than 20 pounds down which I have heard is the outer limit during treatment before one no longer fits the rad mask. I don't have much energy to work out now, but will soon as my strength returns.

John D.


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
Joined: Jan 2013
Posts: 1,291
Likes: 1
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John,

You are doing great on holding the weight. Being close to end of rads and only 15 pounds is less than 10% which is fantastic. You got this sealed up.

The no/off tastes of food is quite common. No taste makes eating a chore, off taste makes it like taking medicine. Either way, just keep up what you are doing as it is serving you very well in holding most weight. Any fat has twice the calories as carbs or protein so pig out on all the fatty things you usually avoid.

Good luck,
Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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As far as needing a new mark with the weight loss, it doesn't really go by the amount of weight lost, but the mask fit, which can be related. Some just don't lose as much weight in the face, initially, some do, and I guess what type weight, how lost, etc. comes into play. I lost 40lbs during my first radiation treatment, I gained from the 110lbs lost just from chemo, a year earlier, and didn't need a new mask, so your techs will see, and RO will decide. Hopefully not, since you will need to have a new mask, another CT simulation, probably have a new treatment plan with the IMRT, which takes time.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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