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Joined: Nov 2009
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I agree, Cheryl. I get together every Friday morning with a group of friends at our local coffee shop. I'm fine to just drink a latte, but then, they usually all go out to lunch, as well, and I am still so limited as to what I can eat. So, unless they go some place where I can have soup, I usually don't go with them. It also takes me a long time to eat, and that's frustrating, too. This is the only place that I can talk about this issue where people understand.


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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It seems people in this country are way too focused on food. Like that lady on TV that suggests you make some nice fattening fried chicken for her family so you can "Show them your love"! I used to be one of those ladies - by the time you spend hours fixing stuff and then cleaning up there's not much time left for just playing, visiting or catching up on each other's lives. At the other end of the food push is the money making weight loss extreme which is not only stupid but an insult to all those who must use it to sustain life. There are so many other things to do when getting together with family/friends. When I visited friends in Mexico, playing dominoes with team competition was the big thing! When I was a child visiting with family in Quebec I remember my uncle playing his violin for me or letting me play with his wood carvings or taking me out to the shed to see the small pony he had there. It was exciting to peek in the window to see where the pony was. I didn't find out until years later that there never was a pony. But the memories of adventure and excitement are still there.


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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Since I've been on short-term disability while recovering from my surgery, I have had the opportunity to immerse myself in crappy daytime TV and I did see Hooda (don't know if I spelled that correctly) and Kathie-Lee talk about this on their morning show last month. I only had my feeding tube in during my hospital stay - 4 days - but that memory will last forever for me.

When I saw this story aired on national television so callously - I mean these ladies were very flippant about women getting feeding tubes to lose weight for their weddings - I was furious. I wasn't surprised, though. More like disgusted. Not just with the women who would do such a thing because I know vanity drives people to do all sorts of moronic things - but with the doctors who participate in this for some extra cash.

Meanwhile, there are people who depend on their feeding tube for survival. While I believe strongly in freedom of choice - as in people's freedom to choose to do stupid things - I don't agree with national media promoting stupidity (I think we all know there are enough stupid people in the world already) and laziness.

It is sad, indeed - moreso even that there are doctors who will do just about anything for a buck as moronic as it may be.


Carpe Diem!!
38, non-smoker, otherwise perfect health. Biopsy: 3/8/2012, SCC Dx Right Underside Tongue: 3/12/2012, Surgery: 4/11/2012 Partial Gloss + Neck Dissection to remove 29 nodes (all clear). No Rads or Chemo req'd. I believe my SCC was caused by product used in dental work.
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Perhaps because I am still so limited about what I can eat, I find myself very impatient with those who use extreme methods for weight loss. If they only knew how hard it is NOT to be able to eat whatever you would like! My sister is currently on this hcg diet where you limit yourself to 500 calories a day and put drops under your tongue. You are even limited to the type of make-up you use. I asked her if she was under a doctor's care for this, and she just said that she researched it. She has lost weight, but who wouldn't at 500 calories a day! I am all for people losing weight when they need it, but there are other methods that are far less extreme. As someone who had to be hospitalized for malnutrition after my treatments, I am totally offended by these extreme weight loss methods. Sorry, guys, I know that I am preaching to the choir here, but I just needed to vent again.


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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"OCF Canuck"
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Losing weight in 500 calories is only damaging her metabolism. Anyone would lose weight on that. However what happens with that is her body will start digesting muscle, as well as stored fat, and she will kill her metabolism as it actually needs FOOD to work properly - she will also stop getting her period and begin to lose hair if this is done over an extrended period (the body to sustain itself will begin to cut out all unnecessary functions and limit blood supply to non essential areas (like the scalp) to support its vital organs - once she gets back to eating normally - which she will have to do at some point, she will gain weight faster and keep it on because she's fried her metabolism.

The best way to lose weight is by boosting your metabolism - exercise, with some weights - and eat healthfully... Lots of veggies, and fruits, minimal meat if she's a carnivore - protein from beans and legumes, and steer clear of junk food! smile and that's my diet advice for the day. smile have an awesome one.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Yeah, the hcg thing is just plain stupid. When you restrict calories to that extreme you're just wasting lean muscle mass first. Muscle breaks down easier than adipose tissue (fat) and is a quicker source of fuel for your body. The more lean muscle mass a person has, the higher their metabolism as they are burning more calories while at rest.

Depending on your activity level and muscle content your diet should be consisted of 20-30% protein. To calculate that if you are on a 2000 calorie/day diet you should be getting between 100 and 150 grams of protein per day. (2000 x %) / 4 or explained number of calories multiplied by the percentage of protein, then divided by 4 which is the number of calories per gram of protein.

Knowing your weight and activity levels determine your calorie intake and then you can breakdown your macro-nutrient (fats 20-30%, carbs 40-50%, protein 20-30%) from there. Lean meats, beans and legumes are good sources of protein and eggs are the "gold" standard really.

Good fats are essential, mono and poly unsaturated fats with your Omega 3 (fish, walnuts, flaxseed etc)/ Omega 6 (oils etc) ratio being about 1/6.

Those of us with eating issues and on a mostly liquid diet it's easier to keep to the ratio's in my opinion. Adding protein powders, oils, nuts etc as we need them in our blends. I agree with Cheryl on the exercise, yoga, walking, calisthenics, some weights keep the muscles going. The older we get, the more we should be active. Sadly our sedentary lifestyles and poor eating habits are killing us as a society. Sad really.




Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Just ask me.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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