What is Myelodysplasia
The myelodysplastic syndromes (MDS, formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varyi...
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My mom has MDS
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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 year old but does suffer from some of the usual old age ailments such as being frail, falling from time to time, hearing loss and so on. The family just moved her into a very nice assisted living center and hopefully she can relax better now and regain some strength. She had been living independantly up until a fall 6 weeks ago. Then she came home and got weaker and weaker and her doctor and hemotologist came up with this diagnosis. It sounds very scarey from what I read online but the doctor told my brother that is was not very aggressive and slow growing and indicated she would probably die of old age before she died of it. He indicated that she was not a good candidate for anything too aggressive such as chemo or radiation. She was in hospital for a course of 10 days and received blood 4 times. That seemed to perk her up. Mom is one to have delayed reactions to things so all the stress from being in hospital and her fall 6 weeks ago is still with her. At this point in time, she is to have blood drawen weekly, her blood levels are watched that way and then Prokrit shots. I know this cannot be cured but I would love to see her get some pep back. She is tired alot. Of course her age doesnt help either. I am posting this because I seek support and am interested in seeing how others are managing their MDS. I know she isnt going to live forever, it seems some family members think that I think she is....but she is my best friend and I try to be open minded and hope and pray she could have a few more years perhaps. Maybe that's just a silly ole dream though. I dunno. I'm very sad over this but I know the body doesnt go on forever so I am in reality with this. Just hoping for some support and kind words. Thanks to all who read and respond and God Bless. Posted on 08/09/09, 01:08 am |
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Hello Suzie,
I am sorry that your mother was diagnosed with MDS. My mother was as well. Do you know which type of MDS she has? There is a cure for MDS - bone marrow transplant. However, I think the age limit for that is 60. A transplant is hard on the body. Has she visited with a MDS specialist? My mother's oncologist is at John Hopkins. They have a few different treatment options available there. It might be worth looking into. Also, to find support in your community, you might want to visit the leukemia and lymphoma foundation's website. They have a plethora of information on their site. Please let me know if you have any other questions I could maybe answer for you. 
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Hi and thanks for your support!
I dont know what type she has. But her doctor told her at her age, 95, chemo and bone marrow transplant is out of the question. Her treatment plan is weekly blood testing and Prokrit shots through hospice at her assisted living center. Her doctor told me that she has had this for at least 4 years and it was rather slow progressing. He ordered Hospice for her only because she needs close monitoring with her blood levels, not that he thinks she has less than 6 months to live. Also when her hemoglobin gets too low, she gets blood too. Hopefully it wont get as low as it got 3 weeks ago with Hospice watching it closely now. It had got down to 4. :-( She had 4 transfusions and perked right back up! She is pretty amazing! Thanks for replying back to me!
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