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MDS Myelodysplastic syndromes

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Old Tue Apr 8, 2014, 10:43 AM
Kathy S Kathy S is offline
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Join Date: Nov 2013
Location: Leesburg, Fl
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Counts are declining

Since my husbands BMB (Dec.2013) and his total remission after only 2 cycles of Vidaza it was so nice to be normal. January I started to see things changing and each month blood results showed a decline. Returned to Moffitt Cancer Center, Tampa,Fl last week where they continue to drop. Yesterday his WBC 2.0 , RBC 3.85, HGB 13.2,PLT 59. Dr. has stopped Vidaza and ordered a BMB for Friday. He said he wants to see what the BMB shows and said there are other options that may be available. His doctor at Moffitt is Rami Komrokji, MD who is speaking in Chicago on Friday regarding MDS. Hopes and prayers to all that are going through this unrelenting disease. No matches have been found for him. Dr. Komrokji did mention something being done in Atlanta with possibility of using some of the childrens DNA for transplant. Has anyone heard anything about this??
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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Old Tue Apr 8, 2014, 12:29 PM
Birgitta-A Birgitta-A is offline
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SCT

Hi Kathy,
Perhaps your husband's doctor said that it could be possible for your husband to get a SCT using cord blood. "Encouraging results have been reported for patients who lack a human leukocyte antigen-identical donor with the use of cord blood and haploidentical donors."
http://www.aamds.org/research-articl...ic-syndromes-0
Kind regards
Birgitta-A
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Old Tue Apr 8, 2014, 06:06 PM
katgio50 katgio50 is offline
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I know of a patient that we met at Moffitt when my husband was doing his induction that went to Minnesota and had a haplo??? transplant using his sons stem cells. He is doing well and is back in FL. My understanding is that it was a clinical trial.
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Old Tue Apr 8, 2014, 06:56 PM
Whizbang Whizbang is offline
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When I was at Hope Lodge after my MSK-CC transplant I met another MSK-CC patient (using my doctor as well) who had a triple (two separate cord blood donors, and his sisters' 5/10 HLA match T-cell depleted stem cells)...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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