Remission after MDS

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• February 21, 2020 at 3:40 am #50188
  Cheyenne Perez

  Participant

  Hi everyone, I was diagnosed with MDS at 16 currently 7 years later I am in remission. I received a weeks worth of chemotherapy and a. Bone marrow transplant to which I developed GVHD. I have a question concerning weight gain/losing muscle mass and shape of body. I was a highschool athlete before being diagnosed and currently I am not pleased with my body not only for appareance but functionality. Does anyone know if developing GVHD of the skin or after having chemotherapy does it become hard to gain weight at a steady pace? I seem to gain but only in my stomach region and I know I should be working out but I also was curious. If this is a common thing.

  February 27, 2020 at 10:51 am #50209
  mdsfound

  Moderator

  Hi Cheyenne, I am sorry to hear what you are experiencing. Chronic GVHD can occur at any point after transplant and commonly occurs in the skin, GI tract, lung and liver. Skin GVHD usually manifests as a rash, tightening of the skin and hyper or hypo pigmentation. This does not seem to be the case for you. I believe it is very common to loss muscle mass with the treatment that has been received in the past and it is very important to remain active and do weight bearing exercises when able. If GVHD is present in the GI tract, it could be difficult to gain weight. I would highly suggest to follow up with your bone marrow transplant team to make sure there is no GVHD or other cause for these symptoms. I hope this information helps.

  March 11, 2020 at 8:05 pm #50243
  Cheyenne Perez

  Participant

  Thank you so much for your reply!

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