Hi all - and especially you ladies out there. Once you were done with treatment how long did it take you to get back to what you would consider a healthy weight? How fast was your weight gain and how many calories a day were you able to consume?

Carol,
I am sure that everyone will have a different experience but here is mine:

Weight pre Tx ~ 170lbs
Weight loss ~ 60 lbs.
Weight bottom ~ 109 lbs.
Currently at 16 months post Tx ~ 145 lbs -a healthy weight for my 5'6" height.

I don't keep track of calories -can't help you there.

Early on I had a lot of Hagen Daz milkshakes (by doctors orders believe it or not) and such to keep the calory levels up. Not any more - calories from 85% butterfat just don't seem like a good idea at this point, not to mention the sugar, although at the time it was necessary. I am far more interested in rebuilding the muscle mass that I lost and minimizing fatigue and muscle pains from "overdoing it".

Since I have been able to eat, I have preferred healthy foods like fruits, vegetables and salads. Low moisture foods don't work well for me and I don't enjoy them in the same way I used to, such as cookies, chips, chocolate, most meats, breads, etc (in other words most of the fattening stuff). This also probably has a moderating influence on the weight gain. I have also found that I can rarely eat all of the food that I get in restaurants for example and the portion sizes I eat in general are much smaller post Tx. I have no swallowing issues so that is not a factor.

I averaged around a pound a week and had various plateaus, like when I hit 140, it stayed there for about a month. It also see-sawed back and forth a bit. I was overweight when I started Tx and don't want to get back to my preTx level.

Hi! I was at 223 & 6'1" pre dx, 176 one week out from end of chemo & rad. My last treatment was 5/27/04 & I've managed to get up to 182-184 for last couple of weeks. Many things just like Gary, except I do eat all the dry stuff & just wash it down with something to drink. I'm starting to get a little gut so I'm thinking I need to lay off all the high fat stuff & start working out to gain some of the muscle mass back. I was a pretty muscular guy before & like Gary lost mostly muscle from so much inactivity. I'm sure it will come back with some work. I don't count calories either, just eat everything I can. I actually ate toasted engish muffins w/peanut butter and washed it down with hot coffee the other day, but it was a lot of work! Whew! It sure tasted good though! I just keep trying everything to see what works & what doesn't! Meals still take focus & effort but it is getting better! Just don't give up!

Hi Carol, I weighed 116 lbs (5'4" tall) before treatment and lost 16 lbs down to just 100 when treatment ended. Even though eating and swallowing were very painful, I insisted on feeding myself through mouth with 3 meals a day and a pack of milk in between meals. I had cereal as breakfast and fish congee for both lunch and dinner. I added different kinds of veggies in the congee to prevent constipation. I have no idea about the calories I got but I managed to increase weight gradually and returned to my previous weight in about 6 months. I am almost 3 years post diagnosis and I can eat almost all the food provided it is not too dry like nuts and chips or spicy. With small sips of water, even bread or cookies is easy to go down.I am happy with my weight now and need to exercise regularly to maintain it. Everyone's progress is different, some slower and some faster. Hope your sister is doing better and better.

Karen.

Hi Carol,

Not a gal, but here's my experience.

I'm 5'8", was about 175 or so before treatment, looking a little porky, 36"waist After first surgery/rad, down to 145, 34"waist. Had a hard time the last couple of weeks of rad, burns to tongue kept me from eating almost anything, even Ensure was extremely painfull. No PEG tube.

Second time surgery/Rad/Chemo started at 145, went down to about 132. 32"waist. That was end of May 2003.

Now back up to I think about 140-145, 33 inch waist. (Not sure weight, scale broke and I dont' really bother checking all that much). Ensure isn't sold here where I live, packed it in from HK for the first 3 months or so. Otherwise, weight gain was from ice cream, the odd bottle of Guiness (doc's orders, I have it in writing) and snacking. Diet otherwise now is rice or noodles, veggies, some meat or fish. Last big weight gain was during a 2 week trip to Australia, seems the diet there is fish and chips, burgers and chips, bar-b-qued chicken and chips, at least the area I was in.

I don't plan on getting any heavier at this point, 145 looks good on me. Need to build muscle mass in upper body, but from chest down in good shape.

Do a search, there's some recipie's for good high calorie shakes on the board.

Bob

Carol,

I think like everybody says each person is different. My mom went through 2 surgeries she started at around 170 lbs (shes 5'8) with the first surgery in April 2003 after that surgery she went down to about 150 lbs. Since they removed a large portion of her tongue eating was very difficult. Then when she had her surgery again in December 2003 she was already back up to about 170 lbs and she lost about 10 lbs after surgery but she tried to eat everything she could before radiation and chemo because she knew she would lose quite a bit of weight. She went down to 135 lbs after radiation now 4 months out she has stayed at 135 lbs. Even though she eats quite a bit she has had a very difficult time gaining any weight back. She doesn't look unhealthy but she did loose a lot of muscle so she has lots of loose skin which she has been exercising to try to tone a little.

My mom still drinks one of those 1300 calorie shakes a day and it has had no effect on her weight.

Take Care,
Dani

Good question, Carol. I gained weight on purpose after the surgery and prior to rad and chemo. I ultimately lost 60 lbs, which was about 20 past where I wanted to be. For the first year, I ate like a linebacker, truly everything and lots of it, and didn't gain an ounce**. During the second year I managed to gain 10 lbs. and have been holding there, but I get more exercise than most people. Someone medical told me that the chemo changed my metabolism. I know that about 6 mos. after end of tx, I had a thyroid test which showed me to be slightly hyper, which was blamed on the chemo still in my system. Bottom line, I don't think many people gain weight right away, so I don't think you need to worry unless she loses more weight, in which case her docs should probably be advised.

**If I could figure out how that works and sell it, I could make a HUGE donation to the OCF!

Carol, I had a peg and still lost 50 pounds, from 200 to 150 at 5'11". I was too heavy to start and too light at the end. Rad/chemo ended February 27, 2004. I regained up to 162 pounds but have now gone back down to 152. Don't know why at this point, but I know I'm not eating enough. I also experienced a lot of muscle loss and when I have the peg out will start exercising to try to get it back. How long since your sister finished her treatment? Did she have rad/chemo, or just surgery? Seems the rad/chemo contributes more to weight loss than surgery. Hope she gets her weight back soon.

Hi - Cathy is at the tail end of her radiation treatments - she has about 2 weeks to go. She had surgery in mid March and was having problems with swallowing after that and had lost weight. She is just over 5 feet and very petite and was only 100 pounds to begin with and is now holding steady at 83. Not sure yet about chemo - we have an appointment tomorrow about that. She had a PEG tube inserted just after radiation started - in retrospect we should have considered that earlier. She is on the high cal Resource 2.0 with 475 cal in a can and we are trying to up her from 3 to 4 a day. Issue so far has been trying to schedule it - her rad treatments have been twice a day and also just getting the volume down without feeling too full and uncomfortable.