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Thread: persistent hunger during chemo maintenance, even when not taking steroids?

  1. #1
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    persistent hunger during chemo maintenance, even when not taking steroids?

    Hi,

    Our 4-yr-old daughter is in maintenance phase of treatment for standard-risk ALL leukemia.

    As part of the treatment, she gets "pulses" of steroids once a month, for 5 days in a row.

    Overall, she is doing well, and clinically speaking, she is responding well to the treatment.

    The one thing we are really struggling with is that she is always hungry, and not just during the steroid pulses. She always asks for more food at the end of meals, wants snacks in between, and wakes up early in the morning demanding a "snack", even before breakfast.

    Has anyone else experienced this, either personally or with a young cancer patient taking steroids? Our doctors are stumped -- they say that typically parents report hunger side effects during the steroid pulses, but not continuously.

    My wife thinks its psychological -- that she's using food for comfort or coping. But I don't think that explains it entirely. Waking up early in the morning tells me it it's physical hunger. Maybe the two are interrelated...

    If anyone has experience or suggestions to share, I would appreciate it!

    Aside from the obvious of trying to keep her from overeating, I'm concerned about her developing a complex about food, or long-term eating disorders. We're also trying to keep us parents sane..!

  2. #2
    Administrator Top User Didee's Avatar
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    Hello. I am so sorry to read about your daughter but so glad she is doing well.
    I hope someone may have some answers for you.
    It may well have to come down to management.

    I have 4 grandchildren between the ages of 2 and 9. None of them have cancer though.
    Her regime which works so very well, the kids know this is how things are.
    They are always hungry too.

    Between meals if they ask they know they have to eat a piece of fruit of their choice then if still hungry they can choose from a variety of other snacks..snack bars, small tubs of jelly (jello in the usa) things like that. They are watched out the corner of her eye so they don't just stash the fruit somewhere so they can get the snack. All food has to be eaten at the table. There may be similar strategies that you can plan as well.

    This is so engrained with them that it becomes a habit. The trick is that this happens EVERY time unless they are ill.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Administrator Top User Didee's Avatar
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    11,461
    This does not encourage them to pretend to be ill either.
    If ill they have to stay in bed, on the couch or play, look at book or watch a movie quietly in the one spot or go back to bed if sicker or lie in on the couch.

    Their brothers or sister can come to them to play but the ill child can not go to them. The others may be having a great time whooping it up outside etc but the ill child can not participate . This also works well.

    During usual school hours they are on the couch or in bed to do things very quietly.

    There have been some miraculous recovery times.
    Last edited by Didee; 02-13-2013 at 12:32 AM.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  4. #4
    Newbie New User
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    Feb 2013
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    My T-Cell ALL son is a pretty picky eater. He eats more on his 5 day steriods monthly then seems to cut back some but is still gaining weight. Overall eats more now then before. It gets pretty hard with his 6MP schedule and often he seems to getting that at 2am because he eats late. http://huntersheroes.org

    Jessie00721

 

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