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MDS Myelodysplastic syndromes

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  #26  
Old Wed Jan 5, 2011, 02:19 PM
Neil Cuadra Neil Cuadra is offline
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Suzanne,

We're so sorry to hear that you lost your mother and that you didn't get to take her home as you'd both hoped. This all happened so quickly since she transitioned to AML. Your dedication to her has been apparent from your posts and she must have felt the love that you and your family gave her during these many difficult months. You have our deepest sympathies.
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  #27  
Old Wed Jan 5, 2011, 02:52 PM
Susan L Susan L is offline
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Suzanne

I am so sorry for your loss.
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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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  #28  
Old Wed Jan 5, 2011, 03:44 PM
Al's Wife Al's Wife is offline
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Suzanne,

I am so sorry to hear of your Mother's passing. You and your family will be in our thoughts and prayers.

Linda
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #29  
Old Wed Jan 5, 2011, 05:43 PM
Greg H Greg H is offline
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Suzanne,

I am so sorry to hear about your Mom. Know that your great efforts to help her were undoubtedly a great comfort to her.

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #30  
Old Wed Jan 5, 2011, 10:37 PM
cheri cheri is offline
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Suzanne
You have been on my mind for weeks....I am sorry for your loss, as we are never quite prepared for the loss of our Mother. Just by your posts, it is obvious you are a wonderful and caring daughter and did everything you could....my heart aches for you....be kind to yourself and know that there are many people whom you have never met that truly care and wish you the best at a very sad time. Take care....
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #31  
Old Thu Jan 6, 2011, 01:51 AM
lindy lindy is offline
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Dear Suzanne, so sorry to hear your mother's passing.
Its so difficult to lose her to AML.
My prayers for you & your family during this sad times.
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Lindy 56, low platelets, thrombocytopenia dx 2009, in watch & wait mode.
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  #32  
Old Thu Jan 6, 2011, 08:48 PM
Gene_In_Va Gene_In_Va is offline
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Suzanne,

Let me echo the feelings of other who have already written to you. I, too, am sorry for the loss that you and your family have suffered. Although this passing is something all of us must eventually face; it is never easy and is especially rough when things change so quickly as they did for your Mom.

Please know there are many folks, unknown to you, who were with you, as best we could be, during these last few weeks by reading your posts. I am sure your Mom appreciated all you and your family did for her.

Gene_In_Virginia
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Male age 64 Dx:RA Del(5q-) Intermediate -1. Dx'd 09/2009 Taking Revlimid 10 mg/day since 11/2009 - now tx independent and normal counts. 2nd BMB results from 5/15/2010: 6 of the 20 specimens now show normal cytogenics.
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  #33  
Old Mon Jan 10, 2011, 05:42 AM
akita akita is offline
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Suzanne,

anybody why is not personally involved by family relations cannot imagine your harm. I wish you much strength in these difficult days. What a big loss. Being with you in my prayers always entering the forum.

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #34  
Old Mon Jan 10, 2011, 12:25 PM
tytd tytd is offline
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Suzanne, I am so sorry that you lost your mother at such a young age. Thank you for sharing her story with us. I hope you are coping OK. tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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  #35  
Old Wed Jan 12, 2011, 09:37 PM
Suzanne Suzanne is offline
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Thank you all for your kind words. I am doing what everyone does in this situation second guessing everything. I can't help but feel she was in the hospital on a very bad week (12/28) many doctors are on vacation and I felt that the staff on wasn't seasoned. I felt like it was Doogie Howser MD. As my good friend Cindy (launch) tells me God holds our last breath so I have to believe this was all meant to be. I just feel so sad, I don't have closure. This senario was never mentioned to us and came as a complete shock.

I wish everyone the best on the boards - good health for 2011, I will still be around checking in on everyone. Again, thank you all for the support you have offered us over the past 3 years.
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Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11
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