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...

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/ Myelodysplasia Support Group

mds and blood transfusions

poshshorty
poshshorty
My dad has been having transfusions since Dec 09. In March he was diagnosed with mds. since Dec he has had about 18 units of blood. Dr said if he doesn't do chemo right now he only has about 6 months. He went from intermediate 1 at biopsy to high risk at return visit 2 weeks later. Anyone know if this is an indication the aml is upon him?
deleted_user
deleted_user
I have read everyones post and have one thing to say. There is always hope. My father had MDS and we beleive it turned into AML. They couldn't even get a BMB from him. His marrow was like jelly. He was on Vidiaza when it was experimental. Nothing really helped. We will never know how bad things became for him at the end cause he killed himself from depression. I don't usually tell people the truth cause frankly it is no ones business. The reason I am now is cause it is so important to keep hope close to your heart and have good doctors.
I now was diagnosed in Nov 5 of this year. I am at stage 2 and have 17% blasts. I am typed and will have a BMT some time after the first of the year. I have had 1 round of Zidaza and 1 blood transfusion. My counts are really low and I am very neutropenia. I don't go out because I am so worried about getting sick. My wbc 1.7 hgb was 8.8 (after transfusion) plt were 84. This was on the 15th of Dec. This has been a whirlwind to say the least. I just want things to move fast so I can get the bmt. I am worried that it will turn into AML. I go back in Monday for an new blood draw. I hope the counts have gone up. In fact I go in twice a week. With the holidays almost here I am getting worried that I can't even see my family.
Okay enough of that... Only good things and happy thought.
I just wanted to let everyone know a wonderful site. More than likely you all have checked it out. http://www.mds-foundation.org/
They have a list of Doctors around the world that specialize in MDS. They are the ones that they approve of and recommend. If you mail them they will send you a packet. The information is very informative.
Keep HOPE alive and pray. Don't give up.....
Wish you all the best Cat