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MDS Myelodysplastic syndromes

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Old Thu Dec 23, 2010, 09:01 PM
Suzanne Suzanne is offline
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Join Date: Mar 2008
Location: Long Island, NY
Posts: 48
AML Help Needed

We got the news today that my mother tgransitioned to AML. She has 45% blast in her bone marrow. They will put her in the hospital on Monday and she will start Clorabine since they don't think her heart can take Induction Chemo. I am very concerned because she is bleeding heavily vaginally. The doctor said there was a 30% chance of getting her into remission and IF she was lucky enough to get remission it wouldnt be lasting. She will need to find a marrow donor and have a bone marrow transplant. I feel like I am in an uphill battle here.

Please pray for my mother, Theresa. We need Christmas miracle in New York!
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Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11
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Old Thu Dec 23, 2010, 09:49 PM
Greg H Greg H is offline
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Suzanne,

I'm so sorry to hear that news. But it's a bit of good news that they are talking transplant.

I think I recall that your Mom is 69, which is pushing it, age-wise, at some transplant centers. If they figure her heart can't take induction chemo, then I bet they are considering a reduced-intensity transplant. Sometimes it takes quite a while to find a matched unrelated donor, but sometimes not long at all. Does she have siblings they can test as potential donors?

You said she has a good positive outlook; that will be a great asset in pursuing transplant. And she's lucky to have you looking out for her.

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Thu Dec 23, 2010, 10:29 PM
Suzanne Suzanne is offline
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Join Date: Mar 2008
Location: Long Island, NY
Posts: 48
Gregg,
There are SO many variables here. IF they get her into remission, IF they get the bleeding under control, IF they find a donor, IF she survives transplant. I don't know if I stated in my previous post because my brain is all scrambled at this point, but she is no longer making her on WBC or platelets, so that is another issue. She had a great outlook up until today, now she is convinced she is going in the hospital and not coming out. What a Christmas this will be.

The doctor looked at me when I cornered him and asked him the odds of achieving remission, a whopping 30%. I am not thrilled with that especially since Vidaza and Dacogen was 50% and neither worked. I am sorry for being like this, but I am so discouraged right now. Some of her comments are just ringing in my head and I can't find a positive place to be. She said to me I had a life and then I got this (and her quality of life is miserable right now) and I am getting used to this because it is MY life and now they want to take that from me too. I hate this disease.

Editing to add no siblings it will be an unrelated donor.
__________________
Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11

Last edited by Suzanne : Thu Dec 23, 2010 at 10:30 PM. Reason: More info
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Old Thu Dec 30, 2010, 07:34 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Suzanne!

I'm sorry I missed your last post on your Mom until today. How are things going? Did they start the induction chemo?

I'm so sorry that she -- and you -- are having to deal with this disease.

Greg
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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