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MDS Myelodysplastic syndromes

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  #1  
Old Sat Dec 24, 2011, 09:29 PM
bebop bebop is offline
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Merry Christmas
I wanted to take a minute to wish you all the very Merriest Christmas. Thank you all so much for being my rocks during my Dad's fight with this horrible disease. I am so blessed! Much love and peace to each and everyone of you.
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  #2  
Old Mon Dec 26, 2011, 04:48 AM
cathybee1 cathybee1 is offline
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Merry Christmas to you. And thank you for being here for us.
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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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  #3  
Old Mon Dec 26, 2011, 05:46 PM
bebop bebop is offline
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cathy after seeing 71 views and only one response I have to wonder lol. my pleasure to be here though for sure!
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  #4  
Old Mon Dec 26, 2011, 06:22 PM
cheri cheri is offline
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Always glad to see you here, Bebop...wishing you a happy, healthy 2012!
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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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  #5  
Old Mon Dec 26, 2011, 09:06 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by bebop View Post
cathy after seeing 71 views and only one response I have to wonder lol. my pleasure to be here though for sure!
These was another thread with this topic. It had more replies.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #6  
Old Tue Dec 27, 2011, 03:38 PM
bebop bebop is offline
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sorry but I didn't see it. I looked for one here though
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  #7  
Old Tue Dec 27, 2011, 04:58 PM
mausmish mausmish is offline
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Elaine - thank you for being here. Your continued strength and support mean a lot. Happy New Year!
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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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  #8  
Old Wed Dec 28, 2011, 08:05 PM
annmonster annmonster is offline
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A belated Merry Christmas to you as well !!! I think some of us haven't checked the forum because we've celebrating ....( hopefully ) .
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  #9  
Old Wed Dec 28, 2011, 09:28 PM
triumphe64 triumphe64 is offline
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That other thread was called "Season's Greetings". It had eleven entries.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #10  
Old Thu Dec 29, 2011, 02:00 AM
bebop bebop is offline
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Happy New Year to you all too!
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  #11  
Old Thu Dec 29, 2011, 08:47 AM
Sally C Sally C is offline
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Hey Bebop,
A belated Merry Christmas to you. And I wish you and all on the forums and their families a Happy and healthy! New Year.
Best wishes,
Sally
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  #12  
Old Thu Dec 29, 2011, 02:45 PM
donna j. donna j. is offline
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I belatedly want to wish everyone a Merry Christmas, and look forward to a Happy New Year for all. I will be entering North Shore LIJ, New York on January 17, 2012 for pre transplant chemo conditioning and am scheduled to receive a bone marrow transplant from a generous and wonderful young woman on January 24, 2012. I am nervous and thankful for the opportunity. I hope to continue to communicate throughout the process, but please understand if there are gaps.
Thank you for the information and support from literally around the world, I wish you all the best of health and happiness.

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #13  
Old Thu Dec 29, 2011, 06:25 PM
annmonster annmonster is offline
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Donna...

I'll be sending thoughts and prayers your way during the upcoming transplant... wow !!... you sure got your transplant quickly !! How did you do that ?? Just curious .....

Ann
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  #14  
Old Thu Dec 29, 2011, 06:34 PM
mausmish mausmish is offline
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Happy New Year, everyone! Donna, best of luck to you with your transplant. I'll be looking forward to your postings when you're up to it.
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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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  #15  
Old Sat Dec 31, 2011, 12:40 PM
donna j. donna j. is offline
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Ann,

Shortly after I was diagnosed with MDS RAEB 1-2k in July 11 by a bone marrow biopsy, I was referred to a transplant specialist. Following a 2nd biopsy, the dr. explained the only ''cure'' would be a transplant. I did receive 2nd and 3rd diagnoses, including Dr. Steensma of Dana Farber in Boston and it was the same: a transplant was the most viable route, sooner rather than later. I thought I would have one by November, certainly by December, so for me January seemed like it took so long. It seems based on my overall health profile, that there was a window with the most chance for success. Following 3 rounds of Vidaza, which did not improve my blood count #s, but may have reduced or held the blasts at bay. I will have my 4th bone marrow biopsy this Wednesday for most current information. I will undergo the transplant, weeks before my 65th birthday. I feel healthier and stronger than I have in months and am keeping a positive attitude.

Of course, I was extremely fortunate that a match was found early on.

Donna

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #16  
Old Sat Dec 31, 2011, 04:04 PM
bebop bebop is offline
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Donna may this be the year you are cured! I will keep you in my prayers!
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  #17  
Old Sat Dec 31, 2011, 06:52 PM
Lisa Z Lisa Z is offline
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Donna
Good luck to you. Wishing you a Healthy new Year with your new bone marrow!
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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