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Old Tue Nov 12, 2013, 11:44 PM
Kathy S Kathy S is offline
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Join Date: Nov 2013
Location: Leesburg, Fl
Posts: 72
Thumbs up Happy I found this Forum site

My husband was diagnosed with MDS in May. It is a whirlwind trying to get information and make the best possible decisions. We started in Buffalo, NY(summer home) and immediately came back to Florida area where our permanent home is (Leesburg,Fl). We first went right to MD Anderson in Orlando, but found out they do not do BMT there. At this time I did research and after getting as much information as possible we made an appointment at Moffitt Cancer Center in Tampa.
He has been on Vidaza since June 24, 2013. On Aug 28th,2013 we had wonderful news that he had gone into complete remission. His report today was the same. All of his blood counts are normal and I thank God for this too happen so quickly.
We have an appointment Dec.4th at Moffitt for another Bone Marrow Biopsy and to move forward for BMT after the first of the year and a donor can be found.
It is totally his decision to move forward with the transplant...I am scared and pray for the strength to be positive for his sake.
He had 2 blood transfusion in the first two months and a unit of platlets.
June ------------- ---- --------------- today
PLT------------ 32 ------------------------- 234
WBC----------- 1.9 ----------------------- 6.0
HGB----------- 8.1 ------------------------ 15.3
__________________
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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  #2  
Old Wed Nov 13, 2013, 07:22 AM
Susan L Susan L is offline
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Join Date: Jun 2010
Location: Ga
Posts: 245
Hi Kathy S

Quote:
Originally Posted by Kathy S View Post
My husband was diagnosed with MDS in May. It is a whirlwind trying to get information and make the best possible decisions. We started in Buffalo, NY(summer home) and immediately came back to Florida area where our permanent home is (Leesburg,Fl). We first went right to MD Anderson in Orlando, but found out they do not do BMT there. At this time I did research and after getting as much information as possible we made an appointment at Moffitt Cancer Center in Tampa.
He has been on Vidaza since June 24, 2013. On Aug 28th,2013 we had wonderful news that he had gone into complete remission. His report today was the same. All of his blood counts are normal and I thank God for this too happen so quickly.
We have an appointment Dec.4th at Moffitt for another Bone Marrow Biopsy and to move forward for BMT after the first of the year and a donor can be found.
It is totally his decision to move forward with the transplant...I am scared and pray for the strength to be positive for his sake.
He had 2 blood transfusion in the first two months and a unit of platlets.
June ------------- ---- --------------- today
PLT------------ 32 ------------------------- 234
WBC----------- 1.9 ----------------------- 6.0
HGB----------- 8.1 ------------------------ 15.3
It is such a scary disease - and so much to learn. I was born in Buffalo and moved to Ga from Florida! What a small world of similarities. This site is fantastic for all of the information that you get. Everyone is willing to help each other. I have my donor found and couldn't believe it - no family so I was scared and they found a 10 out of 10 match! I am here at Northside Hospital Transplant Unit in Atlanta - I arrived yesterday to start testing and treatment (chemo) to reduce my blasts before the transplant that is scheduled for Jan 09, 2014. Feel free to ask any question and best wishes to you both.
__________________
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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  #3  
Old Wed Nov 13, 2013, 11:36 AM
Kathy S Kathy S is offline
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Join Date: Nov 2013
Location: Leesburg, Fl
Posts: 72
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So happy to hear you have found a match. It is scary, but it is so good to be able to share the fears and excitements and prayers with others going through the same thing, either as the person dealing with it or as a care giver. My prayers will be with you. God Bless and hugs.
__________________
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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