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#59073 10-21-2006 01:21 AM
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I agree with Brian. I'm still getting almost all my calories through the tube (despite all sorts of efforts to regain my swallowing), but it's important to me that I try to get as much nutrition as possible that way. I am doing a prescription, high protein (but not especailly high calorie) form of liquid nutrition (Jevity 1.5), which I will continue with as long as my insurance will continue paying, but I also supplement that with fruit and vegetable juices, some of which I get from the health food store and some of which are as simple as V-8 (which I have two servings of everyday) and the equivalent of a glass of whole milk everyday for the extra animal fat it contains (which I don't get anywhere else and figure just a little might help my healing--my cholesterol, low to begin with--is ridiclously low since I've been on this forced diet so mI think I'm OK there).

If you want your body to heal faster, I don't think it's the distinction betwen eating solids and eating from the tube that's key, I think it's what you eat.

I will say, though, I have yet to find a way to make meat liquid enough to go through the tube or down my throat easily so I have bewcome a forced vegetarian But if you can swallow at all, I would try to swallow some meat, which contains proteins your body needs to heal itself more quickly.

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"
#59074 10-21-2006 07:26 AM
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To Sarah, Brian and Nelie,

First, thanks for your posts.

Reading the back of a can of the Carnation VHC, it reads like a supercharged Ensure Plus. 560 cals, 8.45 ozs, 32g fat with 3g saturated, 5ml choles, 290mg sodium, 440mg potassium, 49g carbs with 15g sugar, 23g protein and a whole list of vits and mins mostly 35% to 100% daily values.

I hear what your saying but I'm still a little confused. It seems that by consuming 4 to 5 cans per day I am getting more than enough for my body to heal itself. It takes maybe 10 seconds to drink a can but would take me 30 mins or so to prepare or get and consume solid food. Even though there is no pain in consuming solid food it still is cumbersome and timely.

Being a licensed CPA for the last 34 years has taught me that I usually don't see things the way more normal people do. Maybe I need to be slapped around a bit before I'll see the big picture.


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.
#59075 10-21-2006 09:46 AM
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I am living proof that you can eat almost nothing but cans of Ensure for 13 months and stay alive. But I had horrible mucocitis from the radiation in the times before IMRT. I think that some of my slow healing had to do with the fact that, while the cans of Ensure had a balance of nutrition on the label, there are certainly micro nutrients that are not there, and even when it comes to something as simple as protein...which in Ensure comes from soy, not all proteins are created equal and they vary in the amino acids they provide as well. So since I am not a nutritionist, I will not try to go into the minutia of all this. But there is a difference between sustaining life and actually thriving. Since you can actually eat, which many cannot, I would think that you would be enjoying the leap out of cans and back into real food. It can't really be a matter of you are too lazy to do this...

I LOVE eating now. Sure it's limited and I could no more eat a hamburger than shove a Mac truck into my mouth. But of the things that I find that I can eat, I really savor them after going so long with out the enjoyment of their textures, subtle flavor differences, and exploring and finding new stuff that does fit my capabilities. I wouldn't ever want to distil this enjoyment down to the simplest possible thing, even if I could get it out of a single pill each day. Along with beautiful women, great friends, and challenging discourse with people of a different opinion that I can learn from... eating is one of life's great pleasures.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#59076 10-21-2006 10:37 AM
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Well said, Brian. From someone who misses it very much!


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"
#59077 10-21-2006 05:27 PM
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OK guys, this is what i have tried so far...a pickle, 1-chip with dip, applesauce, peanut butter, cookie, oatmeal, cheerio's, gatorade, 7-up and i think thats about it! For most part, i could taste them all, oh i tried a cheeto and cheezit but couldnt taste them, but it still doesnt feel right? Could it be this trush i have or is this a bad case of mental blockage of EATING? Im going to keep trying until it gets right or whatever...im getting depressed about this eating, why doesnt it work for me? Any suggestions? confused

#59078 10-21-2006 05:42 PM
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Linda, for someone who has attained the age of 46 plus a few months, you sure haven't learned much patience.Does that come from living in Texas? smile
You say you are getting depressed about this eating- I read that you are getting obsessed! People who are anorexic get mental blocks about eating and you are not that--are you? If your mouth and your brain are telling you it isn't time to push lots of food yet- don't. There are lots of small steps you can take-I guess pickles are 1- record each thing that does taste good to you and keep eating those as you try others. I have lots of friends who gobbled things during pregnancy that they would not touch now. Don't get frustrated, just keep exploring. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#59079 10-22-2006 03:03 AM
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Linda, I am envious you are able to even eat a pickle! I still have such a sensitive mouth that anything in vinegar or brine HURTS (and I suspect probably always will since I'm a year and 4 months out of radiation)! I used to be such a lover of things like olives and pickles that when I was seven I asked for a jar of especially good pickles in my letter to Santa!

Eating may never "feel right" like it used to but you are doing way WAY better than some of us here so just keep trying and be grateful for what you can taste and swallow.....


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"
#59080 10-23-2006 02:31 AM
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Linda, I'm glad that you are even at the stage of trying different foods. I think as cancer survivors no matter what stage in our treatment we are in or even past treatment like myself there are issues that are goimg to depress us. If you seen me you would never know that I was a cancer survivor. I know that some head and neck survivors have disfiguring surgeries and as many of you sit and fight your way thru depression I just want to say you have my admiration and love. Every morning when I look in the mirror I still duck but for different reasons. Linda I had a peg and was not able to swallow anything for over a yr. and believe it or not there are many days when I find myself saying I wish I still had my peg in. I was never hungry when I had it in. My problem is I need to drink my ensure to compliment what I eat in order to maintain optimum health. Sometimes I,m a bad boy and don't. My biggest problem was my teeth decaying and my fillings coming out while eating. I had a different cancer than most on this site so I don't think you will have the teeth issues I'm experiencing. I think it is so unbelievable that I have a choice today that I can have a Filet Mignon or a Strawberry Ensure, and to prove the point to never take my advice, I can't decide which to one.
Mark


Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
#59081 10-23-2006 02:31 AM
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Linda, I'm glad that you are even at the stage of trying different foods. I think as cancer survivors no matter what stage in our treatment we are in or even past treatment like myself there are issues that are goimg to depress us. If you seen me you would never know that I was a cancer survivor. I know that some head and neck survivors have disfiguring surgeries and as many of you sit and fight your way thru depression I just want to say you have my admiration and love. Every morning when I look in the mirror I still duck but for different reasons. Linda I had a peg and was not able to swallow anything for over a yr. and believe it or not there are many days when I find myself saying I wish I still had my peg in. I was never hungry when I had it in. My problem is I need to drink my ensure to compliment what I eat in order to maintain optimum health. Sometimes I,m a bad boy and don't. My biggest problem was my teeth decaying and my fillings coming out while eating. I had a different cancer than most on this site so I don't think you will have the teeth issues I'm experiencing. I think it is so unbelievable that I have a choice today that I can have a Filet Mignon or a Strawberry Ensure, and to prove the point to never take my advice, I can't decide which to one.
Mark


Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
#59082 11-03-2006 07:23 AM
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Linda,

Just checking in...everything OK? How goes your recovery? We haven't heard from you recently?


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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