Anyone heard of mixed MPD/MDS?

yingaling
yingaling Member Posts: 1
edited March 2014 in Leukemia #1
My mother, 65 yrs old, was diagnosed mixed MPD/MDS (myeloproliferative disorder/myelodysplastic symdrome) recently when she came here to help me out with my new born baby... The doctors here gave her no treatment other than blood transfusion, and warned us her very fragile condition. Some pathologists suggested this might be AML with M6 variety.
I was wondering anyone has heard/survived from this disease? Despite that we tried to be calm and optimistic,many times we were overwhlemed and sad by the outcome. Any advices/messages are welcome!

Comments

  • chikyuu
    chikyuu Member Posts: 1
    #2
    Hi My name is Naoko
    Hi My name is Naoko lives in Florida but now I came back to my country Japan to take care of my dad.
    My dad was told that He has MDS and MPD by the doctor.
    Doctor went to Cornell university to study Hemotology.
    My fathers case is He has very severe Anemia and Platlets is too high,,,
    Bone marrow result said 12% blast , fiber evidence,,,
    now he just started blood transfusion 3times and a week a go He just started taking Hidorea
    (sorry this maybe missspelled...)
    this is very rare case.. that I heard
  • mtair37
    mtair37 Member Posts: 2
    #3
    chikyuu said:

    Hi My name is Naoko
    Hi My name is Naoko lives in Florida but now I came back to my country Japan to take care of my dad.
    My dad was told that He has MDS and MPD by the doctor.
    Doctor went to Cornell university to study Hemotology.
    My fathers case is He has very severe Anemia and Platlets is too high,,,
    Bone marrow result said 12% blast , fiber evidence,,,
    now he just started blood transfusion 3times and a week a go He just started taking Hidorea
    (sorry this maybe missspelled...)
    this is very rare case.. that I heard

    MDS/MPD
    My husband was told he had this about 4 years ago. He has had several bone marrow tests and went through a year of a clinical trial. That worked for about 12 months then it wasn't working any more. So he now he is on another type of chemo and has been on that for 16 months. We have been told that he could not live without the chemo which he has once a month. After almost 3 years of chemo you wonder how much chemo one can take in their life. He is so fatigued most of the time that you wondered how long he can go on. He really does not want to know a lot about this disease but I do. I have researched a lot and talked to his doctor a lot. He has several bouts with infections and been in the hospital. He has not had an transfusion for almost 6 months now. Mostly because they don't want him to have many as he has a very high iron count anyway. (that was how they found this disease) Too much iron but still anemic. I would say on average after finally keeping a blog on him that we can almost count on him being more fatigues about 3 days before his chemo and for up to 4 days after chemo. So for about 12 days every month he is pretty tired and we don't do a lot. He is trying very hard for my sake but you just wonder how long he can keep this up. Yes I do think this is a rare cancer, and I know that it will not go into remission. Hope you can learn more about this and wish the best for you and your Dad.

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