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#51
Thu Feb 3, 2011, 09:09 PM
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Hey Karen!
Outstanding! Congratulations, 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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#52
Wed Jun 8, 2011, 11:41 PM
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Six month checkup
Just got email from my doctor:
Hi, Everything looks great. Marrow fine (see below) and 100% donor cells. FINAL DIAGNOSIS ----------- Pathologist: MICHAEL J. BOROWITZ, M.D., PH.D. BONE MARROW (BX AND ASPIRATE): *NORMOCELLULAR MARROW WITH NORMAL TRILINEAGE HEMATOPOIESIS. *NEGATIVE FOR TUMOR. Richard J. Jones, M.D. Professor, Oncology and Medicine Director, BMT & co-Director, Hematologic Malignancies Programs The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Room 244, Bunting-Blaustein Cancer Research Bldg. 1650 Orleans Street Baltimore, MD* 21231 *
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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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#53
Thu Jun 9, 2011, 06:17 AM
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Great news, Karen, and cause for celebration!!
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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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#54
Thu Jun 9, 2011, 08:20 AM
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YEAH!!!!!!!!!!
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#55
Thu Jun 9, 2011, 11:09 AM
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EXCELLENT NEWS KAREN! I HOPE MINE IS AS GOOD. I AM 1 MONTH BEHIND YOU!
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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#56
Thu Jun 9, 2011, 09:44 PM
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Fantastic, Karen!
Congratulations! 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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#57
Fri Jul 8, 2011, 10:47 AM
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Another month, doing well
I did a big blog update last night (link in signature) but wanted to let everyone here know I continue to do well after 7 months. Hurray! Thank you for all the info and support.
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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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#58
Fri Jul 8, 2011, 09:23 PM
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Karen,
I wish you continued health and success... what a joy to see those "normal numbers"!
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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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#59
Fri Jul 8, 2011, 09:50 PM
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Hey Karen!
I read the post. You ARE doing fantastic. Congratulations! Got to love those Traveling Wilburys, particularly Roy Orbison, who sounds like a creature from another world in those sessions. 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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#60
Fri Jul 8, 2011, 10:24 PM
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Thank you, Cheri and Greg!
Yeah, The Traveling Wilburys were great, and it was a huge loss to the music world when Roy Orbison, as well as George Harrison died.
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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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#61
Mon Jul 18, 2011, 07:04 PM
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Blog update
Just a quick note to let you know I started my 6th post transplant Vidaza cycle today. My blood counts are great, and I'm doing well otherwise. Almost halfway through the treatments! I did a blog update (link in signature) with the finer details.
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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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#62
Wed Nov 30, 2011, 01:38 AM
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Happy 1st rebirthday to me
One year ago at this time I was in the midst of receiving a large bag of beautiful red bone marrow donated by a brave and generous stranger to save my life. I hope I may learn her identity soon and convey my thanks personally! It's great to be alive.
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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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#63
Wed Nov 30, 2011, 02:26 AM
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Wednesday's the day! Congratulations and happy birthday, Karen!
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#64
Wed Nov 30, 2011, 03:40 AM
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Happy rebirthday!! I hope you take some te today to do something special to mark the occasion!
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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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#65
Wed Nov 30, 2011, 09:44 AM
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Congratulations Karen,
You must be so excited! I hope you celebrate. As I get closer to having a BMT, it means alot to hear about success stories. Enjoy every day! 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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#66
Wed Nov 30, 2011, 05:00 PM
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YAY Karen!!
That's the best news I've heard all day, that's awesome!! I'm so happy for you Karen, enjoy every day...HUGS, Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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#67
Thu Dec 8, 2011, 12:30 AM
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1 Year Exam
I had my one year exam at Johns Hopkins a week ago, and all is good. I got my first set of immunizations (3 shots in one arm and 2 in the other), blood work, and a bone marrow biopsy. My transplant doctor thinks I have "just enough" chronic GVHD to keep relapse away. He did prescribe a steroid rinse for my mouth to try to reduce inflammation in my salivary glands but other than that, I've had no immunosuppressants or steroids. i got my biopsy results today, all good:
"The marrow is normocellular (40%) for age with a normal M:E ratio. All hematopoietic elements are present with full range of maturation. Megakaryocytes are normal in number and morphology. The associated aspirate shows trilineage hematopoiesis with complete maturation. There is no evidence of increased blasts or significant dysplasia. Flow cytometry studies show no increase in blasts. Chimerism: no evidence of patient DNA." My husband and I are doing a happy dance, for sure!
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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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#68
Thu Dec 8, 2011, 06:28 AM
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Great news!!! I'm sure you'll both be dancing for quite a while
.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#69
Thu Dec 8, 2011, 12:39 PM
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Fantastic news, Karen! Well done!!
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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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#70
Thu Dec 8, 2011, 01:50 PM
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So wonderful to read a happy post! Congratulations, Karen.
Praise the Lord and blessings to your donor!
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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#71
Thu Dec 8, 2011, 04:21 PM
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Karen,
Congratulations! You are truly an inspiration! Keep it up. You also answered a question of mine when I was informed by the Donor Nurse that a little GVHD was a good thing. Keep dancing! 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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#72
Tue Dec 27, 2011, 01:29 AM
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Hi, Karen:
I wanted to let you know that I caught up with all your blogs tonite. Reading about your year. What an amazing story. I appreciated the post from Day #30. It resonated so much today. "D + 30: …525,600 minutes… … How do you measure, measure a year… … In daylights, in sunsets … …In midnights, In cups of coffee?… … In inches, in miles … …In laughter, in strife?….. In treatments? …in tears? …in terror? … in friends and family – In fur balls … in moments that last hours, and hours that vanish like the morning mist… In memory of the future and what it is going to be? It has been a year since we found out something was wrong – the journey continues." Thanks and hugs
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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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#73
Tue Dec 27, 2011, 12:01 PM
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Thanks, Catherine! I love that post also. It was written by my husband with some inspiration from the musical, Rent.
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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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#74
Thu Jan 5, 2012, 11:22 PM
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My hero
I had an exciting call from Johns Hopkins today with contact information for my donor. I emailed her immediately and am on pins and needles awaiting a reply!
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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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#75
Sun Jan 8, 2012, 05:44 PM
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Heard from my donor!
I'm so excited! My donor has replied to my email and we are busy getting to know each other. She's a wonderful woman from Washington, not Germany as guessed by my nurses on the night of my transplant. Someday we'll be meeting in person.
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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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