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#101
Mon Sep 2, 2013, 11:27 AM
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Susan,
All the best, will be thinking of you... My eval is 9/20, so I'll be right on your heals... It takes a lot of resolve not to break down, but it's a necessary part of the process (and one we can't always control)... Try and focus on the end goal and not all of the bumps in the road that you might encounter... God bless and be with you... Dave
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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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#102
Mon Sep 2, 2013, 01:03 PM
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Hi Dave
I got it now - just hit a dumb old bump - Where are you having yours done at? If I remember correctly - you have a match already ? Do you know what your blasts are now? I'll be having the 4/6 wks chemo first. Best wishes to us all
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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#103
Mon Sep 2, 2013, 01:25 PM
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Susan,
I'm very fortunate to have my youngest brother a perfect match (He's 38 years old)... I'm being treated at NYU (Chemo) which is three block from my work, but my BMT is at Memorial Sloan Kettering (MSK) 25 block from work... My Blasts were initially at 5.5%, but are down to 3%, and I'm doing Dacogen to bring them down further... And the Dacogen has helped all my numbers except WBC & Neutrophils (which is to be expected)... Only the best to you too...
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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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#104
Mon Sep 2, 2013, 01:34 PM
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Dave
Hi - I saw about the match after I sent my email - very fortunate to have a match like that. Best to you too!
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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#105
Mon Sep 2, 2013, 06:53 PM
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Quote:
We are sending you warm, fuzzy hugs, Susan! Did you get the call today? If not, like Dru and Bob, we want to wrap our arms around you. (((HUGS))) Lots of love, faith, hope, prayers and strength! Patti and Dean
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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#106
Mon Sep 2, 2013, 08:37 PM
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Dru
Hi-No call today - I kindof thought it would happen today as it was a holiday - but I am hoping for tomorrow. Thank you for the warm fuzzies :-)
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Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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#107
Mon Sep 2, 2013, 11:05 PM
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Susan, sending prayers your way....Billy and Tina......We go to Windship at Emory
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Billy - Husband of Tina: 31 years old at dx - June 2007 - Stage 3 Breast Cancer - Dec 2008 Stage 4 - Brain and Bone - Nov 2012 - Therapy Related AML. Curently on Decitabine for Therapy Related AML and Herceptain for ongoing Breast Cancer. Weekly transfussions of blood and platelets
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#108
Tue Sep 3, 2013, 07:25 AM
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billy and tina
Winship - what a small world - I went there 10 yrs ago and had my evaluation started there and then my insurance informed me I couldnt go anymore since it was out of network for me. Then I landed at the NIH which saved me actually. Maybe one day we will meet - you are such a tower of strength for your wife. My husband is my hero also. Best to you both.
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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#109
Tue Sep 3, 2013, 02:20 PM
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Quote:
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Billy - Husband of Tina: 31 years old at dx - June 2007 - Stage 3 Breast Cancer - Dec 2008 Stage 4 - Brain and Bone - Nov 2012 - Therapy Related AML. Curently on Decitabine for Therapy Related AML and Herceptain for ongoing Breast Cancer. Weekly transfussions of blood and platelets
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#110
Tue Sep 3, 2013, 02:40 PM
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billyb
That was good that you found a way. Well this time - Northside is the transplant center for the insurance I have. I am still waiting for a return call and you would think I would know better since I work in the medical field - just like the service - hurry up and wait. I so am not a patient person - I really have to work on that. :-)
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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