Maintaining Weight

PCB Joe,

Thank you for asking, I am doing well, everyone else is in pain or pleasure, either tired or rested, in treatment or post somewhere, consulting Dr.Google or looking for HPV+ statistics, helping their caregiver or  making life he_ _ for their caregiver……….

Experience is what we have.

We are the kings and queens of experience.

You have a complete treatment plan behind you and have zeroed in on still losing ½ pound, if that is a day I might be concerned.  If it is a week or month, I am not.

Sounds like it  is time to POP your PEG return to the land of (maybe) weirdo H&N taste buds.

 Matt

PCB Joe,

You can always drink your calories, which is sometimes easier.

Matt

debbiel0 said:

I am 6 month post treatment

I am 6 month post treatment and still using my PEG for at least half of my daily intake. I am also struggling to gain weight. I lost  15 lbs before treatment, 20 lbs during treatment and another 20 lbs since. I am getting 1200 -1400 calories a day any less and I drop 1lb a day.  I have been able to maintain for a week now, so I am very excited.  I am trying not to stress about the numbers on the scale but embrace the fact that I am feeling better everyday.  If the " new normal " me is 40 lbs lighter, and I am healthy, I am happy!  Looking forward to the day I can eat enough to have my tube removed.

Thank you for these posts. I am 6 weeks post-rx and they wanted to schedule the PEG removal this week. When I confessed that the PEG is providing at least 75-80% of my daily calories they say another month at least. I gained 5 lbs pre-rx, and have since lost a total of 20 lbs, but without the PEG there is no way I could maintain my current 125 lbs. I am also taking in 1200-1400 calories per day. Glad to hear that I am not the only one struggling to hold wt without the assist of the PEG, even after 6 months! They are now concerned that I am never going to get it removed as I have zero interest in food.

abjolly said:

Thank you for these posts. I

Thank you for these posts. I am 6 weeks post-rx and they wanted to schedule the PEG removal this week. When I confessed that the PEG is providing at least 75-80% of my daily calories they say another month at least. I gained 5 lbs pre-rx, and have since lost a total of 20 lbs, but without the PEG there is no way I could maintain my current 125 lbs. I am also taking in 1200-1400 calories per day. Glad to hear that I am not the only one struggling to hold wt without the assist of the PEG, even after 6 months! They are now concerned that I am never going to get it removed as I have zero interest in food.

I thought my tube would be out after a month, so was very depressed when that was not possible. I went to see a nutritionist,who helped me with ideas on how to add calories without volume and flavour to drinks and stratagies to ween myself off.  I am working on those, but admit somedays it is easier to plug in rather than be creative emough to make something that will go down and not taste like dirt. 

My first go to was hot water with greek honey..1 oz approx 170 cal.  A couple of those a day helps boost your calorie intake.

I'm a 47 year old male with SCC BOT Stage 3, no PEG. I am 5 months post treatment. Prior to treatment I weighed about 185 lbs and intentionally gained weight to just over 200lbs.

At the end of treatment my lowest weight was about 158lbs. However, I met with my primary care physician and he reminded me that for my gender and height I should only weigh about 170-175lbs ideally.

For the first month or so post treatment it didn't matter what I ate, I didn't gain hardly any weight. By about 10-weeks the weight started coming back on. Now at 5 months post, I have to watch what I eat as I was starting to creep close to 180 and I want to stay at 175 at most. No more milk shake runs for me!

Have you had a primary care physician tell you what your ideal weight should be? I'm 5' 11", so I'm guessing you'd have to be 6' or taller to have a medically ideal weight of 180lbs. 

For me it wasn't about getting back to where I was pre-treatment - it was about being in the best health possible going forward. Which means actually weighing less.

I lost a total of 13 lb between surgery and chemoradiation. At 110 lb plus going to the gym and trying to be active, as we are pushed to be, I can't afford to lose more. I was fit so lost muscle mass which I am trying to gain back. It's a daily battle, 4 months post treatment. Tissue is still healing and will be for at least a year, so I fully expect the high calorie intake to be necessary, at least for me, for quite a few months yet. I put my caloric need per day around 3,000 to gain.

It could just be your body adjusting to its new normal as we call it.  If you look back at a topic a few months ago regarding weight loss after treatment and years later you'll see the majority of us weigh less than we did in many years prior to getting sick.

And it's not from a lack of eating.  It may be because I try to eat healthier food now but not much has really changed in my diet.  I weighed 185 at the beginning of treatment and got down to 155.  Now I'm stable at 172 no matter what I do.  I haven't been this thin since my 20's.  In the topic thread, my lower weight is just like everyone else.  So you may have to settle for what your body says it needs.

This is all just a guess based on being here for a long time.  Don't be worried about it unless it gets too low.  You'll stabilze soon enough.

tommyodavey said:

New Normal

It could just be your body adjusting to its new normal as we call it.  If you look back at a topic a few months ago regarding weight loss after treatment and years later you'll see the majority of us weigh less than we did in many years prior to getting sick.

And it's not from a lack of eating.  It may be because I try to eat healthier food now but not much has really changed in my diet.  I weighed 185 at the beginning of treatment and got down to 155.  Now I'm stable at 172 no matter what I do.  I haven't been this thin since my 20's.  In the topic thread, my lower weight is just like everyone else.  So you may have to settle for what your body says it needs.

This is all just a guess based on being here for a long time.  Don't be worried about it unless it gets too low.  You'll stabilze soon enough.

 I have rejected the idea of a "new" normal. I am 3 months out from 35 rads, cisplatin for stage 4 bot squamus cell with 1 node involved. I had a feeding tube put in during week 5, pain was so bad could not eat. Went from 223 to 18 in 2 months. I began eating 2 weeks after treatment ended, scrambled eggs and pudding, boring. Swallow therapy pushed me, and now I eat anything, even subs. granted it takes longer, but I am now back to 203 since December, been working construction again for 3 weeks, gym for a month and a half. Everything got better for me when I walked in and demanded the tube be removed, I wasn't using it anyway, but it also forced me to work through the swallowing difficulties. I will never have a new normal, and will live my life like I always did. Irealize everyone reacts differently to treatment, and some have had major surgical procedures as well, I am only talking about myself. When i was diagnosed in august last year, after an hour or 2 of confusion, I vowed I would win. I will not give in to this disease, or the effects of treatment. Sorry if ranting, but I am going to get some fried oysters now, then see if the trout are biting.

MikefromWinthrop said:

new normal

 I have rejected the idea of a "new" normal. I am 3 months out from 35 rads, cisplatin for stage 4 bot squamus cell with 1 node involved. I had a feeding tube put in during week 5, pain was so bad could not eat. Went from 223 to 18 in 2 months. I began eating 2 weeks after treatment ended, scrambled eggs and pudding, boring. Swallow therapy pushed me, and now I eat anything, even subs. granted it takes longer, but I am now back to 203 since December, been working construction again for 3 weeks, gym for a month and a half. Everything got better for me when I walked in and demanded the tube be removed, I wasn't using it anyway, but it also forced me to work through the swallowing difficulties. I will never have a new normal, and will live my life like I always did. Irealize everyone reacts differently to treatment, and some have had major surgical procedures as well, I am only talking about myself. When i was diagnosed in august last year, after an hour or 2 of confusion, I vowed I would win. I will not give in to this disease, or the effects of treatment. Sorry if ranting, but I am going to get some fried oysters now, then see if the trout are biting.

Same as you I just got straight back to it back to work and back to sports. No feeding tube at any time 32 weeks post treatment Ive run 1700 miles and just finished my 2nd Marathon last Saturday in 2:58:40. Im 3 weeks of 58 years of age next stop for me is to run in the Irish marathon chapionships and win the Over 55 cat. Most days I dont even think about it anymore. That Marathon time is 5 minutes faster than my pre treatment best in Aug 2016.