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Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm 6 weeks finished with rads and 8 weeks finished with erbitux on Friday (in 2 days). Still haven't gained any of my weight back. Up until 3 days ago was using g-tube for feedings in addition to eating by mouth. I decided to try and eat more by mouth and less by tube. While some things are still very painful to eat, I've found some foods that are high calorie and have fats too. So haven't used tube at all except for to just flush it out with gatorade for 3 days. Still no weight gain so at this point I see no point in keeping the peg. I don't gain with or without using it.
What do you all think? Can anyone tell me how long it took them to gain weight and also how long they kept their tube.
I'm finding the tube is just getting in my way and also has become a bit sore? Not sure what that is about either. Any advice?
Oh and by the way, I've been eating stew, spaghetti, yogurt, ice cream, cereal, cookies dipped in milk, carnation instant breakfast, and tonight I actually ate a hot dog with the bun! Took me forever but I got it down :-)
Also veggies. Fruit still tastes terrible with the exception of canned peaches, yummy!
Anyway, any advice is very appreciated.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I'm four weeks out from rads and erbitux, and have gained back 10 of the 40+ lbs. I lost. almost all from osmolite 1.5 (6 cans/day) via PEG tube. I also use gatorade via tube, and try to drink (via mouth) a glass of carnation instant breakfast with some ensure/banana/melon/yogurt/honey mixed in per day. mouth is too sore to eat solid food.
the weight gain is my major victory so far, cause I was bone thin--not another lb. to lose.
if I could eat what you do, I'd keep the tube and cut down to maybe 2 cans per day as supplement.
what are your calories? my osmolite is 355 cal. (x 6), so I'm a minimum of 2100 cal/day, probably more like 2300.
I've also started riding the stationary bike to combat fatigue and hopefully start putting on a little muscle.
check with your oncs about the soreness. tube is very useful, I plan on keeping mine for a while.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Blackswampboy, congrats on your weight gain. I too am very thin. I was very thin naturally and to lose 12 lbs was a ton for me. I need to gain some back. I know it will take time but to have gained nothing is a little depressing. I also didn't mention that I was on a continous drip for a few weeks along with eating food by mouth and still nothing. My formula is fiber source and it's got like 320 calories. But as I said I stopped using it because I felt like it wasn't working and it was filling me up and not letting me eat as much by mouth which had more calories.
Still don't know why my tube is sore, talking to GI dr tomorrow. I doubt they will want to take out the peg but I'm so tired of it.
You are my inspiration, I want to gain weight.. I'm normally 100-103 and right now I'm stuck at a way too thin 87lbs, ugh cancer sucks huh?!

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I lost a bigger % of my body weight than you did, so maybe that's part of it.
yeah, I lost a full %25 of my weight from a skinny frame...so I'm just starting to get back some of what was mine. 30 lbs. to go.

have you tried other canned stuff? like maybe not so much fiber?
wish I could get a prescription for 2.0 (like 500 cal/can), but for some reason they'll only give me 1.5.

and it really is terrific that you can already eat so much solid food again. we'll take you as our inspiration. off to try to find something that doesn't burn...it's out there somewhere. ;-)

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I think from reading most posts on here that it might be quiet awhile...nearly a year before you actually start seeing much in the way of weight gain.

Supplementing with Ensure Plus or similar like mentioned is a way to make sure you take any additional or enough calories.

As you found most things will still taste rather crappy for awhile. It probably took a good six months to a year before I got any decent taste back, and over two years to get all of my taste back...sweet being the longest.

But even during chemo and rads, I always supplemented my Ensure Plus with the DelMonthe Sliced Peaches in Light Syrup..they come in jars...mmmm, best thing ever during that time.

They kept my swallow muscles working and did provide a few calories and I could just taste a hint of them.

Hang in there...improvements, especially to taste and saliva is measured in months...

Best,
John

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

It is truly amazing what your able to eat just 8 weeks post treatment. I went 8-9 months post treatment to get to where your at already.

Please keep in mind some history show some people have reactions to treatment months after they stop treatments so the doctors want to make sure your past the cooking stage post radiation of about 9 weeks before they remove tube just in case you do not have problems and they have to put it back. I know a local guy who had a set back from reaction to radiation 5 weeks post treatment where he was not able to eat do to the sores and pain in mouth and throat for 6 weeks. it was a good thing he still had the tube.

my advice is be understanding of so of the side effects that could happen and just deal with it for a short time vs having bigger problems if you had reaction and no tube.

hope your tube is removed soon.

john

Sam999
Posts: 305
Joined: Mar 2012

I am 5 weeks post radiation (no chemo) but still cannot eat much becuause of sore mouth. It seems you are able to eat lot more. As others suggested tube might be useful to push in extra caloeris that you need for weight gain.

I dont have PEG and it is getting very hard to get the calories needed by mouth.

I can completely relate to frustration as i am feeling the same but it seems you are doing better than most do at this stage.

Sam

MarineE5
Posts: 743
Joined: Dec 2005

Billie,

I would only be repeating what the others stated already, but you are doing pretty darn good at this point. My Radiation Oncologist wanted me to keep the PEG Tube for 3 months after my final treatment. Like you, I wanted it out and we agreed on the fact that if I could keep my current weight for 6 weeks, he would remove it. So, after 8 weeks, I had it removed.

Keep eating what you are eating, remember, your body is burning allot of calories, fighting the Radiation and Chemo as we "Cook" for 4-8 weeks after our final treatments. As mentioned above, you will slowly start to gain back the weight. Hydration, nutrition and calories are all key here.

My Best to You and Everyone Here

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Thank you all so much. That why this site is so awesome, we can moan and groan and our friends give encouraging words of advice.
I guess I need to find a little more patience huh? And I know I said I'm eating certain things and most of you said it was good because it's still too painful for you to eat much. Honestly it hurts me too but I'm determined to push thru it because my weight loss has left me very thin. Maybe I'm doing more harm then good? Guess I should go in and talk to rad onc.
Thanks again everyone and feel free to keep the advice coming :-)
Billie

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I lost 60lbs from diagnosis to now, 11/18/11 to 8/2/12 but I could afford
to. I was 260lbs and now maintaining at 200. I'm nearly 15 weeks post
rads and still have little taste and no saliva but I try to eat normal food
everyday, steak, chicken, fish, stews, potatoes, veggies, I try anything
I also mix one can of carnation vhc (560cal) one small benecal (330cal)
a scoop of protien powder (150cal) and some fruit or peanut butter or
a scoop of ice cream (130cal) and you have over 1100 cals so two a day
is ample along with the food.
I can't wait for my taste and saliva to come back fully but like people
on here say it takes a while I'm willing to wait, I'm not doing too bad.

You will get yours in time.

God bless
Tonsil dad,

Dan.

Ingrid K's picture
Ingrid K
Posts: 809
Joined: Mar 2011

Billie, you are doing GREAT to be eating what you are at this point in your treatment ! It took me closer to 8-9 months to be able to eat any kind of solid food, and all I could do was pancakes with syrup. one thing you learn with this damn cancer is to be more patient. everything takes time...lots of it. I would definitely keep the feeding tube for a while longer....if you end up with any kind of delayed side effect, it is not fun to have to have a new one put in.

Add some protein powder if you aren't already doing so....it help in healing.

Keep up the good work. You've just been thru the biggest battle of your life and you need to allow your body to readjust and get strong again.

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

Those pancakes and syrup Ingrid mentioned are loaded with calories and go down easy. Guess I am about 10 weeks post rad. Got rid of my G tube about 3-4 weeks ago but still drink an Ensure a day. My weight continues to go down but not near as rapidly as it did during tx. I make an effort to eat one good meal a day. Not much appetite and I get tired of eating before I finish. My radiologist tried to hook me up with a dietitian to tell me how to add extra calories to everything but I declined. Having been overweight, I obviously know how to add extra chocolate syrup,whipped cream and a cherry. Being as small as you are, that might be an option for learning how to add the extra calories. My ONC wanted me to keep the feeding tube until my 1st scan. I went against her wishes after not using it a month and had it removed. Have since had my 1st scan and all was good. Good that you recognize the need to gain your weight. Stay on top of it. Nutrition is a big key to success.

CivilMatt's picture
CivilMatt
Posts: 2802
Joined: May 2012

Hi Billie67,

Sounds like a little bragging on the food consumption or is it my jealousy? If you can consume the calories needed by mouth and you have no indications that this condition will change, I say pop the PEG. I popped mine at 2 weeks post and never looked back (and it actually made a “pop” followed by a “swoosh” when they pulled it out). Now, I can sleep on my belly if I want to and my snaky little friend doesn’t make any more surprise appearances.

I am still losing weight for two reasons. Main reason, I don’t consume enough calories and the lesser reason because I am still a little over weight. My radiation oncologist told me to quit losing weight and consume ALL the calories required because my body needs the proteins and other good stuff to continue the fight against cancer and to repair the damage caused by rads and chemo. Believe me, I trust her judgment and I should do better. It is just too bad that most foods are on the don’t eat list (no taste, bad taste).

Add some calories; you’ll gain weight (I think).

Best,

Matt

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

1. Eat soft /moist stuff to get all the calories you can

2. Buy the 100% Whey wheat (I did chocolate flavor) HUGE container of it for $44.00 with tons of protein in it. Protein helps your body heal and gain weight.

3. Do you have your peg tube "tied in place" or "bandaged in place" so as to not move or wiggle or get pulled everytime you move or turn over in bed, etc., etc. If not, it will get irritated and possibly inflamed and infected. I had 3 infections with the tube, never could seem to keep the hole covered properly bc I moved so much! :)

4. Man, you are doing well to eat what you are. My throat 6 months out from treatment is quite narrower than when I started treatments...thus the slow, moist food mode I am in. Got almost all my taste buds back though..so very happy about that!

I lost 70lbs in treatment (your body burns 3K to 4K calories a day with radiation...and I'm told still 2K to 3K a month after rads ..this may be why you can not gain weight yet....I just got my feeding tube out first of June 2012 ..and now I am a total of 85lbs lighter...but I am just now leveling off.

You will do great ...hang in there.

Best,

Tim

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Matt,
I got the peg popped today at the request of my Onc nurses and nutritionist. They said my body was rejecting it and I wasn't using it anymore anyhow. Boy can't say it felt too good when they pulled it, yikes! Now it's tender like when I first had it put in. Oh well.
Now it's time to focus on eating as many calories and protein as I can. Not everything tastes good to me but I am determined to do it.
Good luck to you and your eating too.
Billie

tommyodavey's picture
tommyodavey
Posts: 339
Joined: Nov 2011

I am four months out of rads and have been eating normally for at least two months now. Lost around 20-25lbs and haven't gained one pound back yet.

Lucky for me my taste buds returned in six weeks and just some minor throat irritation that hurts but doesn't stop me from eating most everything. Still can't do really spicy or salty foods but to me I'm normal.

Why haven't I gained back a few pounds? I feel like the radiation is still there and working. By 2pm I have to have a nap, no excuses. But overall I feel okay. Haven't started back to work yet but it'll be soon.

It just seems like the RT lasts and lasts...

Tom

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

You are further out than me so I really have no excuse but I was asking my onc why I haven't even gained a pound? He and the RNs explained to be the rads are still working and will be for a few more months. They said not to expect weight gain for a while because the body knows rads are working so body is working overtime to compensate and therefore burning any calories that I've consumed. They advised to add protien powder and double my intake of calories to everything I eat. I'm eating so much now, not great on a sore throat but doing it none the less. I've been snacking on whole milk and cookies all throughout the day between meals. They told me about a vegetable protien powder which is flavorless and available from trader joes. I have yet to try it but I will go and get it. Figure I'll add it to my milk for sure. Also eating a ton of peanut butter. Hard to swallow but good calories and protien. Good luck to you, think butter, sour cream, and all the other good stuff :-)
Billie

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Sounds like you are doing very well with your eating. My husband insisted they removed his tube and they did after just a couple of weeks of finishing treatment. I think the weight gain will come but it is a slow process. He did say everything tasted strange. I guess just concentrate on high calorie entake.

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