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No appetite – losing too much weight-help

Home forums Patient Message Board No appetite – losing too much weight-help


This topic contains 1 reply, has 2 voices, and was last updated by  Peggy Grubbs 2 weeks, 3 days ago.

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    Kerry R

    My father has low risk MDS with a hemoglobin level of 9.8 (it was 8.8 a couple weeks ago). As soon as it went below 9 he has had no appetite at all. He does not want to eat at all. He lost a quick 10 pounds and is still not eating. Has anyone else had this happen? Do you have any suggestions? He was just started on Procrit last week in hopes that a higher hemoglobin level would help his appetite. Nothing is helping. Thank you!


    Peggy Grubbs

    I’m a 68 yr old female and I’ve had MDS-RS for 4 yrs. It is a low risk MDS. My hemoglobin is now consistently in the low 8s and sometimes breaks the 7’s barrier. I have not had any blood transfusions and am starting Revlimid today. The Arenesp shots did not work.

    Ive found that symptoms and their severity come and go.
    I went for a year with little appetite and little interest in food and lost 20 pounds during that period. I saw a nutritionist which helped make the right choices and learned to force myself to eat. Now I’m seldom hungry, but do eat okay. I’ve found that having food available for a quick grab, works the best. Going to the grocery store and trolling through the deli and prepared fresh foods is great. I seldom eat the same as my husband. Protein is key.

    This is a hard disease to deal with. Having the support of friends and family helps a lot.

    Good luck on this odyssey.

    • This reply was modified 2 weeks, 3 days ago by  Peggy Grubbs.
    • This reply was modified 2 weeks, 3 days ago by  Peggy Grubbs.
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