18 Yr Old Son with MDS

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• September 11, 2005 at 7:30 am #8681
  ohanatime

  Member

  18-year old son who has just been disgnosed with Myelodysplastic syndrome. A bone marrow transplant is being recommended. Any information about treatments, doctors, hospitals, etc. would be appreciated. Thank You!

  September 11, 2005 at 8:43 pm #8682
  ali_clare

  Participant

  Hello,

  I am very sorry to hear about your son. I am 26 and my fiance (34) he was diagnosed with MDS (raeb 18%). Both your son and my fiance is so young to have this disease as it is so rare in younger people. My fiance has had his first round of chemo but did not get remission so he is now on his second induction with mylotarg.He is needing a transplant too.

  What subtype of MDS does your son have?

  Ali

  September 11, 2005 at 8:50 pm #8683
  shirlsgirl

  Member

  Hi,

  MDS Centres of excellence….

  http://devmdsfound.org.php53-13.dfw1-2.websitetestlink.com/mds-centers-excellence.htm

  Do you know what classifiction of MDS? I’m so sorry that your son is faced with this horrible disease. All I can say is read, read, read. Although it is very important to have an experienced doctor, it is also important to learn everything possible. Research stem cell transplants, cord blood transplants, successes etc…

  Wishing you and your son all the best,

  Take care,

  Jody

  September 12, 2005 at 12:19 am #8684
  lindajo

  Member

  I am so sorry that your son has join our ranks. The important thing to remember when you hear statistics and predictions for longeviety with this disease are those predictions are based on the average patient that is over 60 at diagnosis.

  Someday through the national registry, better numbers might be available but really aren’t now.

  I recommend that you also check out the Aplastic Anemia-Myeloydysplastic Foundation website. http://WWW.aplastic.org and the leukemia society website. They also have links to clinical trials and the centers of excellance for MDS.

  There are more and more options for patients but first you need to know what type he has. Nutrition is extremely important as is exercise. Be sure and get a nutrionist and a trainer for him to work with, in addition to medical personnel.

  We are all here whenever you need us. Good luck

  September 12, 2005 at 4:29 am #8685
  ohanatime

  Member

  Thank you to all who replied. There is so much to learn about. I do not know what the classification of his MDS. We will need to ask his doctor.

  September 12, 2005 at 5:47 pm #8686
  Jimbob

  Member

  When you try to find the best place for your son to receive treatment, I reccommend that you place great importance on having family and support system close. Without family and support, even the best care can fail. And when the patient realizes that the family is undergoing extreme hardship to be away from home to be with the patient in a center far from home, the concern and a sense of guilt may be too great. Just my most hmble opinion.
  Jim

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