Tip for anyone with high calorie needs and a tube

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1
I'm significantly overweight and was struggling to maintain using the feeding tube. If I fed myself anything super thick or rich, I felt sick. Feeding by syringe works, of course, but I was looking at 10 cans a day because I use the product made from real foods (Compleat). Unfortunately, even that doesn't get away from the corn syrup but I'll cut it out as soon as I can eat by mouth again.

I switched to the gravity method, where you fill a bag, hang it from an IV tube, and let it drip in. It's actually easier and more convenient than the syringe and less prone to mess. Better yet, I can get in two bags at once this way. I can even do a full bag of water if I feel like I haven't had enough, set it to a slow drip, and essentially do my own hydration.

I wanted to mention it in case it helps anyone else out!

Comments

  • jtl
    jtl Member Posts: 456
    #2
    Why would losing some weight
    Why would losing some weight hurt you? I know you mentioned before that your doc wanted you to keep your normal weight even if that was overweight but I never understood the logic. Most of us lost weight I was not overweight but I still lost about 12% and only gained a couple of pounds in almost 6 months post rads. It may change later but at this point I just don't have the appetite that I once had and I think my stomach has shrunk so when I eat they are much smaller portions. All is good. In my case I looked at it as a chance to lose a few pounds the hard way. I can see where drastic weight loss regardless of the starting weight is bad, but a little shouldn't matter. Fluids are a different story. Just curious.
    Regards,
    John
  • Laralyn
    Laralyn Member Posts: 532
    #3
    jtl said:

    Why would losing some weight
    Why would losing some weight hurt you? I know you mentioned before that your doc wanted you to keep your normal weight even if that was overweight but I never understood the logic. Most of us lost weight I was not overweight but I still lost about 12% and only gained a couple of pounds in almost 6 months post rads. It may change later but at this point I just don't have the appetite that I once had and I think my stomach has shrunk so when I eat they are much smaller portions. All is good. In my case I looked at it as a chance to lose a few pounds the hard way. I can see where drastic weight loss regardless of the starting weight is bad, but a little shouldn't matter. Fluids are a different story. Just curious.
    Regards,
    John

    There are a couple reasons
    I heard this from two radiation oncologists, my medical oncologist, the NP handling my chemo, and two radiation nurses... so I took it to heart.

    Even weight loss at a safe rate (1-2 pounds a week) means your body is consuming fat (and sometimes muscle) in your body and burning energy to do it. When you're being hammered by simultaneous chemo and radiation, your body should be spending as much energy as possible on healing, which means building muscle and tissue rather than burning it.

    The second reason is that weight loss causes my body to change shape. It means my radiation mask doesn't fit, and that they would have to remap all the locations. It's hard to remap accurately since my old PET would no longer match a new CT scan, and a new PET wouldn't show where the old disease was.

    Both those reasons made perfect sense to me. You also tend to feel a little run down when you're losing weight, even at that safe rate, and I want to eliminate anything that might make me feel worse from the treatments (including not getting enough sleep, stress, etc.).

    I look at it this way: I'm in week 5. I have this week plus 2 more of treatments, and then however long it takes me to recover. After that, I plan to have plenty of time to lose weight the way I believe is healthy (mainly primal) instead of going on the cancer diet. ;-)
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Laralyn said:

    There are a couple reasons
    I heard this from two radiation oncologists, my medical oncologist, the NP handling my chemo, and two radiation nurses... so I took it to heart.

    Even weight loss at a safe rate (1-2 pounds a week) means your body is consuming fat (and sometimes muscle) in your body and burning energy to do it. When you're being hammered by simultaneous chemo and radiation, your body should be spending as much energy as possible on healing, which means building muscle and tissue rather than burning it.

    The second reason is that weight loss causes my body to change shape. It means my radiation mask doesn't fit, and that they would have to remap all the locations. It's hard to remap accurately since my old PET would no longer match a new CT scan, and a new PET wouldn't show where the old disease was.

    Both those reasons made perfect sense to me. You also tend to feel a little run down when you're losing weight, even at that safe rate, and I want to eliminate anything that might make me feel worse from the treatments (including not getting enough sleep, stress, etc.).

    I look at it this way: I'm in week 5. I have this week plus 2 more of treatments, and then however long it takes me to recover. After that, I plan to have plenty of time to lose weight the way I believe is healthy (mainly primal) instead of going on the cancer diet. ;-)

    Thanks for the info, Laralyn....
    I'm still not having to use my tube, but everything I know about it now, will be handy for when that times comes. More than one person has talking about letting it drip at night, while you sleep....are you doing that?

    p
  • Laralyn
    Laralyn Member Posts: 532
    #5
    phrannie51 said:

    Thanks for the info, Laralyn....
    I'm still not having to use my tube, but everything I know about it now, will be handy for when that times comes. More than one person has talking about letting it drip at night, while you sleep....are you doing that?

    p

    Not while I sleep
    I use it while sitting at my desk and working, or at night while watching TV. I worry about things coming loose if I roll over while I'm sleeping, and soaking our mattress in what would probably become a pretty smelly, hard to clean tube feeding mess!
  • jtl
    jtl Member Posts: 456
    #6
    Laralyn said:

    There are a couple reasons
    I heard this from two radiation oncologists, my medical oncologist, the NP handling my chemo, and two radiation nurses... so I took it to heart.

    Even weight loss at a safe rate (1-2 pounds a week) means your body is consuming fat (and sometimes muscle) in your body and burning energy to do it. When you're being hammered by simultaneous chemo and radiation, your body should be spending as much energy as possible on healing, which means building muscle and tissue rather than burning it.

    The second reason is that weight loss causes my body to change shape. It means my radiation mask doesn't fit, and that they would have to remap all the locations. It's hard to remap accurately since my old PET would no longer match a new CT scan, and a new PET wouldn't show where the old disease was.

    Both those reasons made perfect sense to me. You also tend to feel a little run down when you're losing weight, even at that safe rate, and I want to eliminate anything that might make me feel worse from the treatments (including not getting enough sleep, stress, etc.).

    I look at it this way: I'm in week 5. I have this week plus 2 more of treatments, and then however long it takes me to recover. After that, I plan to have plenty of time to lose weight the way I believe is healthy (mainly primal) instead of going on the cancer diet. ;-)

    Good explaination,
    Good explaination, especially the mask part since I never would have thought of that. I actually had a CT scan before every treatment for alignment purposes. Things didn't change much but they were always "tweaking" the table. RT does burn calories.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
    Feeding at night
    Having a mess at night is not a problem. Jim has done his feeding at night while sleeping since June 2011 without it ever coming loose. He even has a backpack if he needs to go some place and feed at same time; which he used once when we had to go to the hospital to visit my mother. He starts around 6pm and it runs through 8am in the morning which frees up the day.

    Debbie

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