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  #1  
Old Thu Oct 21, 2010, 10:13 PM
mausmish mausmish is offline
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A match has been found!
Johns Hopkins contacted me today to let me know they've located a perfect match. They need to make certain the donor is still available and willing. If so, I'll begin my preliminary tests soon with tentative transplant dates 11/22, 11/29, or 11/30 if all goes well. My husband and I are very emotional at this point, both excited and scared. I will know more next Monday.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #2  
Old Thu Oct 21, 2010, 10:27 PM
Debbie W Debbie W is offline
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Karen
What great news and I can imagine that you are both happy and nervous. All the sudden things speed up, but you have done your homework.

Very happy for you!
Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #3  
Old Thu Oct 21, 2010, 10:31 PM
Greg H Greg H is offline
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Congrats!
Karen,

Awwwllll-right! Great to hear that you have a match. I love your description: excited and scared. I can only imagine.

Keeping fingers crossed for you . . .

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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  #4  
Old Thu Oct 21, 2010, 11:47 PM
Laura Laura is offline
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Oh WOW Karen! That is just awesome! I am so happy for you! Congrats to you! Keep us updated.
Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #5  
Old Fri Oct 22, 2010, 03:55 AM
Julianna Julianna is offline
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Wow... go girl! I can understand your feeling. Hope the best for you.
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #6  
Old Fri Oct 22, 2010, 04:52 AM
Neil Cuadra Neil Cuadra is offline
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Congratulations, Karen. Best news ever. We're excited for you!
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  #7  
Old Fri Oct 22, 2010, 09:35 AM
squirrellypoo squirrellypoo is offline
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Ooh great news! Fingers crossed the donor is still available!

And with dates like those, you'll have new blood by Christmas!!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #8  
Old Fri Oct 22, 2010, 10:14 AM
tserdogan tserdogan is offline
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Congratulations.This is very good news.i undertsand your fellings.i hope all your wishes come true.
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  #9  
Old Fri Oct 22, 2010, 11:33 AM
launch launch is offline
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Awesome!
Awesome News Karen! I can relate to you and your husband's feelings... Excited & Scared. My husband and I are feeling the same two specific feelings, but, we are really at peace right now, as compared to 1 year ago... things are looking up for us, as we wait for my husband's match, we have embraced our next stage in this battle.... And, we keep reminding ourselves, this is "The Cure".

Hugs & again, Congrats!
Cindy
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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  #10  
Old Fri Oct 22, 2010, 02:07 PM
Susan L Susan L is offline
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Karen
Congratulations - I am so very happy for you!!! Best wishes to you and your husband.
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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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  #11  
Old Fri Oct 22, 2010, 09:49 PM
Chirley Chirley is offline
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How wonderful. I'm a tad jealous.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #12  
Old Thu Oct 28, 2010, 04:48 AM
mausmish mausmish is offline
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Thanks, everyone!

Chirley, I understand your feelings completely! I felt the same while I was waiting and others had matched siblings.

I found out this evening that my donor is still available and willing but I don't have a date yet. I'll start my pre-transplant tests next week sometime.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Last edited by mausmish : Fri Oct 29, 2010 at 01:07 AM.
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  #13  
Old Thu Oct 28, 2010, 07:18 AM
squirrellypoo squirrellypoo is offline
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Oh that's a big sigh of relief to hear the donor is still willing and able!!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #14  
Old Thu Oct 28, 2010, 10:23 AM
Greg H Greg H is offline
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Super news
Hey Karen!

That's super news about your donor! Keeping fingers crossed that all continues to go well.

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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  #15  
Old Thu Oct 28, 2010, 01:12 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by mausmish View Post
I found out this evening that my donor is still available and willing but I don't have a date yet. I'll start my pre-transplang tests next week sometime.
That's great news, Karen. Your donor is a hero for joining the registry and agreeing to be a donor. It's too bad he or she can't read this and feel the appreciation.

Perhaps they'll tell you a few facts like the age, sex, and country of your donor. In a way it doesn't matter but for some reason those few details were important to us when they found a donor for my wife. When you're thrown a lifeline you naturally wonder who is at the other end!
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  #16  
Old Tue Nov 2, 2010, 03:19 PM
PJ1972 PJ1972 is offline
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Great news Karen , im new to this forum and due to have bone marrow transplant soon as well , im from London and the donor is coming from America.
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  #17  
Old Tue Nov 2, 2010, 03:33 PM
Susan L Susan L is offline
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Pj1972
Quote:
Originally Posted by PJ1972 View Post
Great news Karen , im new to this forum and due to have bone marrow transplant soon as well , im from London and the donor is coming from America.
Congratulations to you!! And I am jealous. Best of luck to you.
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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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  #18  
Old Tue Nov 2, 2010, 07:29 PM
mausmish mausmish is offline
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Neil
Quote:
Originally Posted by Neil Cuadra View Post
That's great news, Karen. Your donor is a hero for joining the registry and agreeing to be a donor. It's too bad he or she can't read this and feel the appreciation.

Perhaps they'll tell you a few facts like the age, sex, and country of your donor. In a way it doesn't matter but for some reason those few details were important to us when they found a donor for my wife. When you're thrown a lifeline you naturally wonder who is at the other end!
I agree - as of now, no info on my hero but I hope to be able to get a few general facts.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #19  
Old Tue Nov 2, 2010, 07:34 PM
mausmish mausmish is offline
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Tests are progressing
I sailed through the lumbar puncture and bone marrow biopsy today, essentially no pain and really very little discomfort despite being wide awake with local anaesthesia only for both procedures. If all tests are okay, I'm to be admitted on 11/23 for chemo and then get my transplant on either 11/29 or 11/30, depending on when the marrow arrives. I'm also getting my Vidaza treatments this week...busy, busy.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #20  
Old Tue Nov 2, 2010, 07:39 PM
Susan L Susan L is offline
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Karen
Again so happy for you. On your match -this was not a relative right? How fortunate to find that match. Best wishes to you.
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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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  #21  
Old Wed Nov 3, 2010, 08:38 AM
Lori Patrick Lori Patrick is offline
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Karen, CONGRATULATIONS. Keep us informed every step of the way! Hugs, Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #22  
Old Thu Nov 11, 2010, 09:28 PM
leeslay leeslay is offline
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congratulations!! I am being admitted on the 16th and getting my new marrow on the 23rd. I totally understand how you feel. I am in America and my donor is in Europe, so it'll take a day for the marrow to get here. We are praying for no bad weather!! Good luck to you! I'll keep an eye out for your posts!!!
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Lee-39 years old-AA,PNH and chromosome 12 disorder-1 rabbit ATG treatment and 1 horse ATG treatment. Getting my bone marrow transplant on November 23, 2010!!!! Counts as of 12-27-10 HGB 12.0, WBC 7.8, platelets 80, Neut# 3.9(12-24-10)!!! Just a touch of GVHD but back home!
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  #23  
Old Fri Nov 12, 2010, 12:48 AM
mausmish mausmish is offline
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Lee
Lee, I just responded on your thread before I saw you had replied on mine. I haven't been able to get any info about my donor but I've been told my transplant may occur in the wee hours of the morning so am surmising Europe or someplace else far away.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #24  
Old Fri Nov 12, 2010, 01:05 AM
mausmish mausmish is offline
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Pre-transplant tests completed
I had my consult with the transplant doctor today, and all my test results came back fine. My bone marrow biopsy showed only 3-4% blasts and no chromosome abnormalities! He declared me to be in complete remission, ideal for the transplant to proceed. I asked if he was sure I need to do this now and he said yes because of my prior chromosome abnormalities and blasts--I was well on my way into AML when initially diagnosed. Also, because the Vidaza will stop working at some point that can't be predicted, now is the best time. I am ready. My admission date is Nov. 23 to begin conditioning chemo with transplant on 29 or 30, depending on what time the cells arrive.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #25  
Old Fri Nov 12, 2010, 03:27 AM
Neil Cuadra Neil Cuadra is offline
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Karen,

I'm glad to hear that you cleared those hurdles and have the dates set. The explanation for why you still need a transplant makes sense to me - that was a good question to ask.

We will be thinking of you as the end of the month approaches.
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