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MDS Myelodysplastic syndromes

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  #1  
Old Mon Apr 6, 2015, 06:39 PM
TonyBegg TonyBegg is offline
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neutrophil recovery from induction chemotherapy

Karin has the full gamut. PNH for 26 years, severe AA since July 2013, MDS that recently turned into Acute Myeloid Leukemia. We were setting up for an unrelated donor BMT at Methodist Hospital in San Antonio TX when the AML turned up and while we have a donor waiting we needed to get induction chemo to put the AML into remission - which involves getting the blast cells (immature cells) in the marrow down below 5%. She is scheduled for another marrow biopsy on April 13th which is 28 days from start of chemo at UNM hospital. Currently the highest we have seen neutrophils is 2 (literally 2, not 2 x anything) since the chemo. One of the hematologists mentioned needing 1000 neuts for a useful marrow biopsy, but I do not see how that can happen without a BMT for someone with severe AA where we usually run less than 500 neuts. They cannot neupogen her till after the biopsy. Anyone with AA and AML out there who can give encouragement concerning how long it takes neuts to recover sufficiently well to show remission in AML? Thanks.
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  #2  
Old Tue Apr 7, 2015, 02:09 PM
PamMc PamMc is offline
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Tony,

I don't have any answers and wish I knew, but I want you to know I am praying for you and Karin.

Pam
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  #3  
Old Wed Apr 8, 2015, 07:00 AM
SLB SLB is offline
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Hi and sorry we have to meet this way.. I had MDS that transformed to AML. I have had numerous biopsies and most with very little to no neutrophils. Even before my chemo, my neutrophils were less than 0.1, and after my induction chemo my marrow never regenerated so before starting neupogen, my neuts were 0. I was never told having no neuts meant I couldn't have a BMB, however I always had platelets prior.

After my first round of chemo, i was 5-6 weeks in hospital before being told though my bone marrow wasn't working I still wasn't in remission. Second round, my bone marrow never kicked in either but I was declared in remission & went straight to transplant.

Not sure if this is helpful.. But I wish you all the best! I understand how awful it is waking up every morning waiting to see if your neutrophils have even increased the tiniest amount! Hang in there
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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Old Fri Apr 10, 2015, 03:45 PM
TonyBegg TonyBegg is offline
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thank you - that helps so much

Hi Sharnie -I have copied your response and e-mailed to Karin. She is resting right now and I have my laptop set up at a nearby hotel. This is going to be so useful - to show the doctors if nothing else. We keep looking at the percent neuts and lymphs to try to deduce the number of neutrophils (behind the 0.0 number) and the highest Karin has fielded is 2! Her reds have stayed in the Hgb range of 7 to 8 for about 8 days so we wonder whether she is producing reds and that means she has some marrow cellularity. Hgb 6 today so she is getting a bag plus some IV iron chelator. She needs encouragement today - biopsy scheduled for Monday and no neuts. She just wants to get on with the BMT and a chance at real recovery. Thanks so much and I am sure Karin would want to give you a hug.
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Old Fri Sep 18, 2015, 02:43 PM
HopeW HopeW is offline
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So how is AML defined? My marrow showed 9%blast and they still say it is MDS. And didn't say they need me to have chemo b4 BMT?
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41yo Female, AA with digestive problem in May 2005, hATG+Cyclosporine no response, 11/2005 SLE diagnosed, Cellcept+pred, digest resolved, but still tx, 5/2008,shingles and IV pred, stop cellcept, tx free until 5/2015, MDS EB1, Marrow blast 9%, Monosomy 7
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  #6  
Old Fri Sep 18, 2015, 05:23 PM
bailie bailie is offline
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The simplest guideline is blasts over 20 percent.
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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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  #7  
Old Fri Sep 18, 2015, 07:16 PM
HopeW HopeW is offline
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Thanks, Bailie.

So do they need to bring down blast to less than 5% before having BMT for MDS?
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41yo Female, AA with digestive problem in May 2005, hATG+Cyclosporine no response, 11/2005 SLE diagnosed, Cellcept+pred, digest resolved, but still tx, 5/2008,shingles and IV pred, stop cellcept, tx free until 5/2015, MDS EB1, Marrow blast 9%, Monosomy 7
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  #8  
Old Fri Sep 18, 2015, 09:13 PM
bailie bailie is offline
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The lower the blast count, the better results generally. Having said that, there is one study which indicates that the line is drawn at 12 percent blasts.
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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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