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  #76  
Old Sun Jan 8, 2012, 06:23 PM
cheri cheri is offline
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That is wonderful news and I am so happy for you! What a special bond!
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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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  #77  
Old Mon Jan 9, 2012, 12:24 AM
Neil Cuadra Neil Cuadra is offline
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Hearing news like yours always gives us goosebumps, Karen.

I hope you don't have to wait long to meet in person.
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  #78  
Old Mon Jan 9, 2012, 10:15 PM
Greg H Greg H is offline
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Very cool!

Take care!

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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  #79  
Old Fri Jan 13, 2012, 10:07 AM
mausmish mausmish is offline
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Words from my donor...

A copy and paste from our blog:

Michael and I are very excited! I’ve been corresponding with my donor, Mary Lou, all week. She’s a delightful person, as I knew she must be. We’re flying to Washington state to meet her and her family in May, so I’ll finally be able to thank her face to face. In the meantime, we’ll continue to be in touch. Getting to know each other is both interesting and fun! Words can’t begin to describe how I’m feeling.

Mary Lou has kindly given us permission to post her comments about being a donor:

“My [bone marrow] donation experience was wonderful – I received so much support from every person that I encountered throughout the process. I live in SW Washington – our home is actually on the Columbia River which borders Washington and Oregon so I’m about as far south in the state as you can go! I had to go to Seattle, which is about 3 hours away, on 3 separate occasions for screening, pre-op and the procedure. The procedure itself was uneventful. Post-op, I recovered very nicely. I anticipated that it would be extremely painful and was pleasantly surprised that it was not as bad as I feared. It took about a month or so for me to return to my normal energy level. I would do it again in a heartbeat, and have encouraged everyone I know to sign up for the donor registry. My husband and I had signed up about 5 years before I was called as a potential donor. I couldn’t believe how easy it was to get on the registry – just provide a cheek swab and you are good to go! I honestly don’t understand why anyone who is able, would not sign up to be on this registry. The discomfort/inconvenience a donor goes through is nothing compared to the gift that they can give. Many people I knew were skeptical about me doing this and would say, ‘I could never do something like that,’ and that is just so hard for me to understand.”

To donate, visit the Be the Match at http://marrow.org/.
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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 Jan 13, 2012 at 03:19 PM. Reason: clarify that it was a bone marrow donation
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  #80  
Old Fri Jan 13, 2012, 10:34 AM
Greg H Greg H is offline
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Karen,

Thanks much for posting this. I think what makes it particularly important for potential donors to read this is the fact that your donor was donating marrow, not peripheral blood stem cells. That means she had to endure the equivalent of many bone marrow biopsies all at once, and yet she clearly would do it again in a heartbeat.

It's a great gift that she has given, and it's very encouraging that she found the experience personally rewarding.

Please thank her on behalf of all us other bone marrow warriors.

Take care!

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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  #81  
Old Mon Jan 16, 2012, 12:11 AM
cathybee1 cathybee1 is offline
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It is so great that you get to meet your donor, Karen. This is wonderful wonderful stuff.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #82  
Old Mon Feb 27, 2012, 08:59 PM
Janice M. Janice M. is offline
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Two MUDs found!!!

I was first diagnosed with MDS in May 2011 and have been an avid follower of posts on this wonderful forum. I got great news the other day that there are 2 unrelated donors found for me if there is a need for a BMT in the future. I was reluctant to post this news since I am not dealing with the issues that many of you face with transfusions and other treatments yet, but am simply at a "watch and wait" stage. I feel a connection with many due to the diagnosis but am feeling blessed that as low as all three of my blood counts are, I am able to live a relatively normal life at this point.

I am extremely grateful for this news and I thank everyone on this forum for the support they provide everyone dealing with all aspects of this disease.

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #83  
Old Mon Feb 27, 2012, 09:24 PM
Greg H Greg H is offline
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Congrats!

Hey Janice!

Congratulations! It does give one some peace of mind knowing that there are potential donors out there -- I know it eased mine a bit when my transplant center found a couple.

Never hesitate to share good news. We love good news around here, no matter whose it is!

Take care!

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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  #84  
Old Mon Feb 27, 2012, 11:22 PM
mausmish mausmish is offline
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Congratulations, Janice! I know it's an enormous relief to have matched donors available.
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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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  #85  
Old Mon Mar 5, 2012, 07:45 AM
Lori Patrick Lori Patrick is offline
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I'm a bit slow commenting - but YIPPEE! So happy for you. Blessings to you. 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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  #86  
Old Mon Mar 5, 2012, 09:06 PM
Janice M. Janice M. is offline
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Support Appreciated

Hi Greg, Karen and Lori

Each evening I spend some time reading the days' posts on Marrowforrums.
The information and support that is provided is needed and appreciated by all who are dealing with this disease. I can only imagine how much time and effort many of you spend to provide information to others that are perhaps dealing with a new diagnosis or treatment issues.

I am fortunate, in a way, to be at a "watch and wait" stage, but I still feel a need to connect, and cheer on others that are dealing with MDS. Thanks for sharing in what might be "life giving" news!!!

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #87  
Old Sat Sep 8, 2012, 05:21 PM
mausmish mausmish is offline
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:( Now I have tongue cancer

Last week, on the 20 month anniversary of my successful BMT, I was diagnosed with cancer on the base of my tongue. It was like being hit with a truck! This was so unexpected. I'm feeling great physically and have done so well against the odds with my high risk MDS and subsequent MUD bone marrow transplant. Michael and I are trying to gear up for round two - most likely surgery and radiation. More info on our blog, linked in my signature below.
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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 : Sat Sep 8, 2012 at 10:23 PM.
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  #88  
Old Sat Sep 8, 2012, 10:18 PM
milliken2 milliken2 is offline
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Karen;
I am so happy for you. And God Bless your donor. I wish both of you well. And of course - you both will be in my thoughts and prayers. Good Luck to each of you - and stay healthy as you can up until that time.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #89  
Old Sat Sep 8, 2012, 10:21 PM
milliken2 milliken2 is offline
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Karen;
I am so sorry - I did not see your last post. Of course - my previous one was meant for you and your bone marrow donor. Good luck with this new hurdle.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #90  
Old Sat Sep 8, 2012, 10:40 PM
mausmish mausmish is offline
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I gessed that, Beth. No problem. I suppose I should've started a new thread to avoid confusion. Also, it's a pain for people to go through 4 pages of posts to get to the most recent.
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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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  #91  
Old Tue Sep 11, 2012, 07:05 AM
squirrellypoo squirrellypoo is offline
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Oh Karen, I'm so sorry to hear that. What a blow, after all you've been through. But you know how strong you are now, you've beaten this before, and you can do it again, too. Summon up the strength you need to fight this new challenge and take each day as it comes.
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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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  #92  
Old Tue Sep 11, 2012, 08:38 AM
Sally C Sally C is offline
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Dear Karen,
I can't tell you how sorry I am to hear of this latest challenge. But I know you're going to beat this. Stay strong and keep the faith.
God Bless,
Sally
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