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#118553 - 06/26/10 03:50 AM Re: need to stop losing weight [Re: walknlite]
ESikon Offline
Platinum Member (300+ posts)

Registered: 06/22/09
Posts: 440
Loc: Texas
I too wonder how normal size people make it. I was a little pudgy, I just had my 3rd child and hadn't lost the baby weight yet. I lost about 65lbs, started at 168 and now I'm 102. I think the last time I weighed that I may have been in junior high.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
OCF Regional Coordinator of San Antonio Walk

#149448 - 05/12/12 03:40 AM Re: need to stop losing weight [Re: EzJim]
phrannie Offline
Contributing Member (25+ posts)

Registered: 05/07/12
Posts: 31
Loc: Montana
Every meal I eat, I back it up with a high calorie nutrient drink...Waffles with tons of butter and syrup, backed up with an Ensure Plus....for breakfast. Lunch I usually have bean soup or some kind of legume, and another Ensure.....I actually gained 3 lbs doing this....I have no weight to lose (haven't since I started treatment)...when I gained the 3 lbs, you'd have thought I'd won the lottery and shared it from the reaction in the Dr.'s office...LOL.

Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.

#149609 - 05/15/12 08:19 PM Re: need to stop losing weight [Re: phrannie]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Ron used to weigh 189 @ 6'1 and he was still thin size 34 waist BUT he had muscle mass on that skinny frame. Now...he weighs 132 maybe...but he is eating but not 3 meals IF he ate 3 meals I think he could gain back his weight but he says the time it takes to eat and what he has to go thru he would rather eat 1 time a day BUT sometimes he does eat more. His big thing still are my baked beans I make him every Sunday a small roaster full with a lb of bacon and they last him all week and he also eats Stouffer's Mac n cheese and creamed beef on toast and he had a taste for Cauliflour with lotsa butter so I made him that yesterday. He eats alot of pastas. Cheese caneloni's, and I made a homemade Pizza Pot Pie! He was able to get some crust down cuz it's soft. But he's still thin. He eats peaches canned and can get down fresh strawberries with sugar of course! He eats pretty good WHEN he eats! So far he 's doing good.
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

#151250 - 06/25/12 06:51 PM Re: need to stop losing weight [Re: EmilyE]
Mike O Offline

Registered: 06/24/12
Posts: 2
Loc: Eastern Ontario Canada
I really had a hard time near the end of my treatment and post treatment. I weighed in at 187 lbs. the first day of treatment. I recieved my first dosage of cispaltin and the first of too many radiation treatments. Certain smells made me nausous regargless of where I was (fuel, coffee, bacon, eggs, burt toast, meat cooking)very common smells just would make me feel horrible and became worse as time and treatments progressed. I would vomit at the thought of food sometimes. By the second chemo treatment I had lost a little over the 10% the doctors told I was not alowed to lose more than before they would stop treatment. I still continued treatment. By the last treatment of chemo I ended up with a gastral nasil tube which worked for about a week and got me through the final part of treatment. Post treatment My wife and I tried to continue with the tube feeding and meds in liquid form. I hit a brick wall and would throw it all up and would remain nausous reguardless if it was isosource, medicine or water. I amitted myself to the hosptal after the May longweekend here in Canada at 140 lbs. Ii had lost 25% of my overall body weight and was hospitalized for thirteen days hooked up through my P.I.C.C line in my are and fed TPN. The GN Tube was removed the first day. I felt better by day five but all the meds and blood work needed to be monitored daily and meds and TPN all liquid so I had up to five lines in me at one time on one IV pole. I looked like a science exsperiment. It got me through. I have been home for about two weeks now and am finding it a challenge to get the cals into me. I am sustaining weight but not gaining. The suggestions are very helpful on this site but sometimes a full bowl of soup will take two hours to consume and shakes an hour. My throat has gotten a little more sore lately and is exspected as I have read. I have increased breakthrough pain meds to combat the pain but doesn't always work. Time is what will tell. My new saying is "This is not the rabbits race but the tortoises. Slow and steady wins the race." I know what to exspect and the information helps and supports us patients in recovery, so I believe the tortoise will win if I keep a steady and easy pace. I tried to get better too fast too soon and found myself flat on my ass doing so. Slow and steady with a positive additude will surely prevail.
SCC HPV 16, Dx Mar 08/12, 7 weeks rads (35 treatments) 3X cisplatin, NG tube X 3 weeks, TPN in Hospital post rads for 13 days.

#151275 - 06/26/12 01:27 PM Re: need to stop losing weight [Re: walknlite]
davidcpa Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
After I walked out of that dark tunnel appx 3 weeks post Tx I consumed appx 3000 cals each and every day and didn't gain a pound my entire first year post Tx so don't expect to start gaining it back any time soon. I am back to my pre Tx weight so the gains will come but not for a L O N G time.

Keep up that attitude as it usually takes us appx 2 years to recovery as much as we are going to.

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.

#151295 - 06/26/12 08:05 PM Re: need to stop losing weight [Re: walknlite]
Cathi Carpenter Offline
Supporting Member (50+ posts)

Registered: 02/28/10
Posts: 79
Loc: Aurora, CO
I was chubby 176 @ diagnosis and in 4 months, I was down to 109. Now stay around 115 but have to eat alot to even maintain that! The weight loss is definitely one of my "upsides" of cancer!

57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends

*** 1-7-16 passed away unexpectedly ***

#151297 - 06/26/12 08:32 PM Re: need to stop losing weight [Re: walknlite]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
When our bodies lose weight during treatment, it's not generally adipose tissue (fat, stored "energy") instead its lean muscle mass.
The body kicks into a hyper-metabolic state during treatment, as we well know, and is burning calories at an incredible rate trying to heal itself from the treatments, maintain "normal" body functions, as well as trying to fight off the cancer. Due to the poor digestion/absorption environment caused by hormones, the body has no choice but to start cannibalizing itself, with lean muscle tissue being the fastest/best burning fuel. This is one of the reasons that cancer patients look so "flappy," with lose skin, no muscle tone, and high body fat percentage.

This loss of lean muscle mass is also a huge cause of weakness and fatigue after cancer. With the bodies constrained testosterone and high cortisol levels post treatment, recovery is generally slow which is why we feel so "blah," along with most certainly thyroid issues and lingering effects of pain medications. The key to getting back up to speed? Nutrition and Exercise, Baby!

You will hear me say often that nutrition is half the battle to fitness and health, I sincerely believe that. We have to understand that "what" we eat is as important as how much we eat and when we eat. A calorie isn't just a calorie, top level athletes and trainers have known this for "years". Everything we eat matters if we want to run at the "best" our bodies can. It's crucial to know the proper breakdown of macro-nutrients in our diets to promote the best hormone response as carbs affect cortisol levels in the body, fats help testosterone levels and cell repair, proteins provide the building blocks to all of our lean muscle mass. It's a balancing act using food to control the most important hormones in your body.

Knowing when to eat and what to eat and how much to keep your metabolism functioning, boost immune function, control hormone response, build or maintain lean muscle mass is paramount. You "are" what you eat! Nutrition isn't just "energy," it's what we're made of and who we are, and is the key to healing and rebuilding.
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.

#151298 - 06/26/12 09:55 PM Re: need to stop losing weight [Re: walknlite]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
While we are on the fitness and nutrition bandwagon, let me put in another plug for fitting in some sort of physical activity as soon as medically allowed after/during treatment. I am convinced that one of the reasons my husband bounced back so quickly was walking the dog every morning.

Caregivers, too!!! If I had taken my advice better, I might not have gotten the auto-immune flares that I did.

Edited by Maria (06/26/12 09:59 PM)
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

#151361 - 06/28/12 12:59 AM Re: need to stop losing weight [Re: walknlite]
bbagby Offline
Contributing Member (25+ posts)

Registered: 07/04/11
Posts: 25
Loc: North Carolina
Reading about the massive amount of weight some people lose I'm amazed I only lost 20 to 25 pounds. But I only weighed around 142 to 145 when I started. I dropped to a low of 121 and am about 132 now (13 months after last treatment). I thought I was going so starve to death.
Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.

#151779 - 07/08/12 10:58 AM Re: need to stop losing weight [Re: walknlite]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
After losing 90 lbs, I have no weight but the weight of my bones and loose skin. I keep this feeding tube busy but can't gain an ounce. It seems I live OK with a weight of 130 & 129. My lower jaw without bone is the funniest looking part of me tho. Hell, but I am alive.
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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