Myelodysplasia Support Group

The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified within the hematological neoplasms.

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  • Hello there. I have had MDS for the past 10 years, and have been on the "wait and see" journey. I am so frustrated now. My hemoglobin levels in the past year have been pretty crappy. Lately it was 8.8 when I had my last biopsy on 10/21. I had a shot of Procrit on 11/28. and the hgb. only jumped to 9.0. This slow drop in hgb has been going on the past year, and I am tired of hearing "there...
  • shop17


    About to begin this chemo treatment and looking for others experiences with it.
  • Hi everyone. I am in stage 2 of my MDS, and have known about this disease since I was 39. I am 47 now, and seem to be having a difficult week. I had a shot of Procrit on Monday, 4/15, but still seem to be dragging, short of breath and very frustrated. Has anyone else experienced this from time to time? Normally I feel better a day or two after a shot, but not this time. Help!
  • deleted_user

    Is anybody there?

    I just joined the first of May. Sent one message asking for advice. NOTHING!!. Also no acknwledgement of being a new member. Is this a dead blog?I have kidney failure, bleeding AVM's and MDS. I am male, 72 yrs old.Am starting Vidaza Monday.I NEED to know if there is anybody else in the combination that has been through Vidaza treatments. I want to know how you did. Did your kidneys suffer? Did...
  • birdmom232

    New member

    Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.How can I contribute to this discussion?
  • poshshorty

    Caregivers group

    This one is for all the caregivers on the forums! please come join us here even if you are not a caregiver you are welcome! I know at times all I do is sit and cry and feel that no one understands. WE ARE NOT ALONE!
  • I know this is a group for MDS but there is no MDS/MPN group. I was hoping someone here had info. He was diagnosed last July and has been on chemo since. The doctor told him he has 2-3 years. This time line was reiterated by my mom. I can't stop crying.
  • pcebelak

    Should we start exjade?

    My husband was diagnosed in May last year. Immediately started transfusions. Gets at least 2 units per month. This week we were told he needs to start exjade. He is 72. How long would it take for the iron overload to cause problems if he decides not to take exjade or if he can't tolerate it? At diagnosis we were told he was low risk MDS. confused about how quickly we needed to get...
  • deleted_user

    New Questions

    I was wondering if someone could answer some questions for me. My husband was diagnosed with Myelodysplasia in July, 2013. Since then, he has received a blood transfusion every 28 days. A couple of times, it was only two weeks apart. His Hemoglobin has been anywhere from 4.8 to 7.8. But it is usually in the 5._ range. In fact, when it was 7.8, they wouldn't let him get blood. He is having trouble...
  • I was wondering if anyone that is, or was, taking Revlimid also have children in their home. My husband's doctor has just prescribed Revlimid for his MDS. We have 2 children, both girls - ages 10 and 8. I am a little concerned about this medicine with all that I have read about it. One place I read that any caregivers are to wear gloves while handling the patients bedding and clothing....
  • deleted_user


    I am a77 year old retired engineer who was diagnosed with MDS about a year ago.I have been receiving Dacogen infusions for 5 days every 6 Weeks. I have tolerated the treatment well with the exception of having constipation frequently. Does anyone else out there have this problem, and if so, how have you dealt with it? Any suggestions would be greatly appreciated.
  • deleted_user


  • deleted_user

    Chromosome Defect

    After doing some research i have found some mds patients have a chromosome defect. My dad died two weeks ago of mds, and I would like to know if there is a test I can take to see if I am at risk for this disease.
  • deleted_user

    My mom has MDS

    Hello to everyone!What a nice support group for those afflicted with MDS.I am Suzie, 53, from WI. I do not have it but my 95 year old mother does. It started coming on about 6 years ago according to her doctor. But all this time, we didnt have a name for it. He just told us she was severly anemic. For several years she has been getting Prokrit shots on and off again. Mom is a very sharp 95...
  • TwoBoyz

    Hoping for Some Reassurance?

    Hi Everyone - Not sure if anyone will read this or have any insight to offer, but I hope so. My white blood count is always low when I fast, but if I haven't fasted, it is over 4, into the normal range. My last fasting WBC was 2.6 and my last non-fasting WBC was 4.8. My doctors have said that fasting/not fasting has no impact on the test. I see an hematologist every 3 months for peace of mind...