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Weight loss during External Beam Radiation

zipperneck2012
Posts: 27
Joined: Mar 2012

I'm kind of confused about weight loss during external beam radiation. My oncologist told me to expect to lose a lot of weight, but my radiation therapist/oncologist told me to try not to lose weight....

What was your experience?? I can't imagine being able to keep my current weight (which is not a healthy weight) up when my diet is going to be so drastically changed....

Thoughts? Comments??

Noellesmom
Posts: 1302
Joined: Aug 2010

was never told one way or the other whether he should expect to lose weight. At the doctor's advice, he did have a PEG tube put in place. Fortunately, Jim never lost the ability to eat anything and everything.

No weight loss during radiation but about two months later, the weight started disappearing. According to the radiation oncologist, this is how it happens for some people. An already slender 165 lb at about 6 ft, Jim dropped to 126. Throughout the entire treatment and afterward, Jim easily consumed 5500 calories a day - he was always a grazer and we just added significant meals and a huge bedtime snack to his eating.

A year and a half out from treatment, Jim is at about 155 which is very slender but acceptable. He has good energy and is bothered only by chronic pain related to radiation damage to nerves in the area of the tumor.

Jim was scoped by his ENT Wednesday of this week and all looks good.

Best wishes for your treatment experience - I hope it goes as well as Jim's did. We feel he was very blessed. It is no picnic by any means but it could have been so much worse.

KTeacher
Posts: 937
Joined: Jan 2011

during treatment, try to keep up calories. Add protein powder to your drinks. The first time around I lost weight and muscle, I was very weak for a long time. The second time I added protein powder to my smoothies and tried to eat things higher in protein. You will loose weight, I wasn't offered a PEG but from what I read, if it is offered, get it. I did have a week or more the first time that even water hurt (mouth sores and thrush). Be proactive, get pain med and use it. I could not swallow lidocane but I could rub it on my lips before I ate and put on the mask! Stay with this group, read the Superthread, so much support here.

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

I agree with KT, keep up the nutrition. My rad onco was not in favor of a PEG tube, however he also told me this wasn't the Jenny Craig weight loss center either, and would only allow a 2 lb loss or less per week, if I lost toooo much weight I would get the PEG. Needless to say I had extra weight to lose, but they still wanted me to consume 2500-2700 caloroes a day..as the onco nurse said food is fuel, and they don't want you to lose muscle mass, and eating helps in the recovery. All in all I probably lost 35-40 lbs which is good and I plan to keep it off. I ate wheter I could taste or not, plus used supplements of ensure or boost plus, and drank at least 3 qts of water everyday. I will say my eating may have been better than a lot of folks since I didn't have mouth sores or swallowing issues.

Linda

Klynten
Posts: 29
Joined: Dec 2011

I had quite a bit of extra weight, and lost a total of 100 lbs during radiation. But I had a lot of side effects and just overall had a rough go of it. I was also encouraged not to loose weight during treatment. Once I had my peg tube figured out and my nausea was more controlled I was able to maintain my weight. Well I should say control my weight loss, I loose approximately 1-2 lbs a week now on my current calorie regimine. The peg tube was very necessary for me, I just wish I had got it sooner!

Good Luck, lots of good advice on here!

Clinton

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

Luckily I did not need the PEG. My cancer was a low grade so my RT was also low. Less side effects but surely not fun.

I am 6' and started at 186 pounds. Had a bit of a belly as I'm thin everywhere else. Last Monday, weigh in day, I came in at 169 lbs. So a total of 17 lost. I know I've lost more as I can feel it and see it in the mirror. My tech said if I lost too much they'd need to do another CT scan and recalibrate my mask to fit my thinner neck. So I have been trying to eat okay. Luckily I only have two treatments left.

After reading the first post of this topic I got up and figured out how many calories I consumed yesterday. In my mind I am eating three meals so I should be okay. No, my total intake was 980-1000 calories. So now I have to really think about calories and not just the meal. How many were I taking in before this mess occurred? What is the recommended calorie intake for a man of my height? I thought it was around 2400. Wow, that's more than twice what I ate yesterday and I didn't get very hungry. So this is a wake up topic for me. I'm going to the store to buy some higher caloric foods. Healthy of course.

zipperneck2012
Posts: 27
Joined: Mar 2012

I hear that they want to keep weight loss around 2 pounds per week, but then I hear people say that they lost like 30-40 pounds...for some of you who lost 30-40 pounds, how many weeks was your treatment??

Noellesmom
Posts: 1302
Joined: Aug 2010

Jim had 35 radiation treatments and three chemos.

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

My main chemo treratment was 1 all day session every 21 days...I had 39 rads or 7.5 weeks with 1 concurrent carboplatin for every week of rads, 7 of those. So between the chemo and the rads the weight loss occured.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

In order to not confuse people: I've been unfortunate and have had recurrent and aggressive SSC. These comments pertain to my initial radiation treatment.

I gained 8 pounds during the 6 weeks of radiation. After radiation, I put myself on a diet and lost the 8 pounds and an additional 20 pounds. I'm still over weight. The weight loss post radiation was intentional.

Keeping my weight up during radiation was a struggle. I took Hydrocodone every four hours. After the med, I could eat/drink for about an hour. Every swallow was painful. Smoothies, juice and protein powder. Also yogurt.

It did not hurt if I did not swallow. If I wasn't getting nutrition down, I spit my saliva into a tissue. I could get two pain-free hours by not swallowing. Save the pain for the nutrition.

Forget about normal eating patterns. Three meals a day plus a night snack means nothing. Eat what you can, when you can. Find liquid and near-liquid foods while you can still eat your favorite solids. Boost, Ensure, Glucerna (for diabetics), find the drink that's for you.

Maintaining weight is very possible; but a real challenge. Rick.

nwasen's picture
nwasen
Posts: 235
Joined: Feb 2011

I am 5 foot. Went into treatment at 134 (too much for my height but food was my last crutch after the age of 50). I had been a light weight of 100 or less most of my life. My radiation doc really didn't want me to have a tube but after about week 4 of radiation when all food tasted like I would imagine dirt tastes like, having a throat that anything going down felt like crushed glass and dropping a whopping 30 some pounds....PEG tube was inserted.
I learned later why he didn't want me to have the tube. I became very dependent on it. I had alot of scar tissue after my treatments ended and it was just easier to feed myself thru the tube than to try and eat. I didn't drink much either.
So, my advice is if you do have the tube, continue to at least drink water by mouth. (The tube will get you the correct nutrition too tho so that is a plus for the tube).
If you have troubles eating once your treatments are over then you can always seek help with a speech therapist. I had swallow tests to determine where my scar tissue was. I had electrode therapy along with two stretches.
coming up on 16 months out and I have all my taste buds back, no saliva issues and am currently weighing in at about 106...right where I want to be.
Good luck with whatever road you end up with or without tube.
It can be done, just hang in there!

Marty36
Posts: 84
Joined: Aug 2011

I've joked that I sometimes feel like the prize pig at the fair, constantly being weighed to determine how things are going. Ultimately, it's a good thing that you and your doctors are concerned about your weight because they view a significant weight loss as a sign there is a problem.

That said, you are probably going to lose weight. I'm about to reach the end of my first year and I've lost 50 pounds. But I started around 275 and am now down to 225. I lost a good amount of the weight after my first series of surgeries. During my first round of chemo/rads, I lost about 15 pounds which is pretty good over nine weeks, but I was able to eat the entire time (although it was never fun) and had minimal pain. I tried really hard to hit 2200 calories and tons of protein. I regained some of that weight afterwards, then had another surgery and another round of rads/chemo. I've lost another 15 pound or so after a month because I did have pain this time and, quite truthfully, I was tired of trying to calorie load and have enough protein. If I never have another protein shake or bowl of soup, I'd be a happy man. I knew my recovery woud be shorter this time so I wasn't as diligent, although once I managed the pain better I was having more calories/protein.

I'm now able to eat better and with significantly less pain. What I find is I get "full" much faaster and eating takes longer. Thus, I'm taking in probably 1300 calories a day (because I'm just burnt out on ice cream and protein shakes, although I'm happy to have cheescake) and the snacking I did when I weighed a lot more has ended because I can't eat dry foods and sweets as easily.

The benefit has been--as my general practitioner said--is I'm healthier now (except for the whole cancer thing) than I've been in 20 years. Cholesterol is down, no more high blood pressure. I'm at a more realistic weight for my height/frame.

Chryssi's picture
Chryssi
Posts: 12
Joined: Apr 2012

Hi zipperneck,

I lost 40 pounds during my treatment and even though my doctor was concerned neither of us wanted to opt for the feeding tube. I kept as hydrated as I could with liquids. I also had severe nausea so it was difficult. Couldn't have any of the thick protein drinks but Juven is a powder mixed in water and it helped. My doc gave me shots to increase my white blood cell count and towards the end steroid shots along with B12 shots. Now I'm slowly regaining strength, drinking lots of Ensure, and eating bananas, and soups. I hope to eventually be able to eat more solids but the dry mouth condition is very prohibitive at the moment.

stayingpositive's picture
stayingpositive
Posts: 84
Joined: Apr 2012

week three (final week) and i've gained five pounds. I've had to push hard to eat this last week because the throat pain has increased and the numbness in my throat seems to have affected how I swallow a bit and my taste buds have gone psycho on me, i've only lost saliva on the left side of my mouth so i'm grateful for that. I've gained because like I said i'm pushing calories in as much as I can go before chemo next week, i'm going to be on it for a month, five times a week (with port), then three times a week for 48 weeks. I'm told i'll probably loose between 30 to 40 pounds over the year. I'm 5'10" and weigh in at 155lbs now and hope to put on at least five more pounds in the next few days, so hopefully I won't be down to but about 120 to 130 lbs, and thats a bit light weight for my height.

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