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MDS Myelodysplastic syndromes

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  #1  
Old Wed Dec 10, 2014, 10:40 PM
Haley1019 Haley1019 is offline
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MDS to AML but low blast count

Hi,
My name is Haley, and my mother in law was diagnosed with MDS in June. At that time, her doctor said she had RAEB II with a blast count of 14%. She's been getting Vidaza once a month for the past 5 months. She had a hard time tolerating the chemo, so they had to lower the dosage and increase the time between rounds.
About 2-3 weeks ago, she developed lesions on her back, legs, and eye. They did a biopsy and found it was leukemia. She was hospitalized last Monday and they started induction chemo. It has been very hard on her as well...her heart rate has slowed and they've had to put a temporary pacemaker in. They also did another bone marrow biopsy when she was admitted last week, and we just received the results. The doctor told us she does have AML now, however her blast counts are only 4%. I tried to ask how that was possible, but didn't quite understand the explanation.
Until we have the chance to find out more information, I was hoping someone on here might be able to give me some insight. I've tried to learn as much as I can about MDS and AML online, but it's still so complex.
The doctor also said she myelofibrosis.
Thank you for your help.
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  #2  
Old Thu Dec 11, 2014, 02:51 PM
bailie bailie is offline
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Do you know her blood counts (WBC, RMC, platelets etc.)? I am certainly not the expert, but I would be surprised by the explanation that you heard. Often it is the blast count over 20 that determines AML. It is always good to record the conversation with the doctor if possible.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Thu Dec 11, 2014, 06:00 PM
Haley1019 Haley1019 is offline
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Thank you for your reply. I wish I had recorded the conversation or at least written down some of the things she said. I've tried my best to research this online, but I still don't understand how they can give her an AML diagnosis with only 4% blasts? Her oncologist is out of town for a week and she has another bone marrow biopsy scheduled for Monday, so hopefully we'll find out more then.
I don't remember her exact counts, but her WBC were 1.something, RBC were 5.something and platelets were in the 200's, which is the highest they've been since before her diagnosis.
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Old Thu Dec 11, 2014, 06:25 PM
DanL DanL is offline
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haley,

i am sorry to hear about your mother in laws difficulties thus far. there are a couple of instances where a person gets an aml diagnosis even with a low blast count, and i believe that has mostly to do with specific chromosome rearrangements called translocations. another time that it goes to aml is if she has auer rods present.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Fri Dec 12, 2014, 01:59 AM
Hopeful Hopeful is offline
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Hi Haley,

I'm sorry to hear about your mother-in-law's condition.

Perhaps the Vidaza started working to lower her blast count???
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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Old Fri Dec 12, 2014, 09:15 PM
maggiemag maggiemag is offline
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Hi Haley. I'm not a doctor, but I think your mother's case has something to do with leukemia cutis. I remembered someone on this forum being diagnosed via skin lesions first. I haven't read the whole article in depth, but the following does mention skin bx for leukemia can precede blood and marrow findings. Hope this helps!
http://ajcp.ascpjournals.org/content/129/1/130.full.pdf
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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Old Fri Dec 12, 2014, 10:41 PM
Haley1019 Haley1019 is offline
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Thank you so much for your help! I read that article, and it sounds very much like what is happening to my mother in law. It just didn't make sense that her skin biopsies showed evidence of leukemia but her blast count was so low. I really appreciate sharing that with me.
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