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#1
Thu Jul 2, 2015, 09:03 AM
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Happy 1st re-birthday to me!
Yesterday was my first re-birthday. I celebrated by going to the hospital and having a battery of tests. I passed them all except it takes 2 weeks to get the bone marrow bisopy results. The doctor is confident that I will have no problem passing it and that I may be on my way to a cure. Keep tuned for a year or two for final results. This is the first time in over a year that I was in the normal range for all three of my blood counts (red, white and platelets). Even though it has been 6 months since my last visit to the hospital close to a dozen people remembered us upon sight. We had a good time revisiting with them.
I am suffering some problems, notably eyes, mouth, throat, rash, and fatigue. Doctor said it is a combination of graft vs. host and prednisone withdrawal. He put me back on immuno suppressant and steroid in addition to antibiotic and antiviral. I was taken off these too quickly. With the restoration of the drugs I should feel as good as a month ago which was pretty good. The GVHD is only mild to moderate but he does not want it to become severe like the last time it put me in the hospital for two months. Perhaps the most lasting side effect is that transplant causes dental decay. I ended up with 6 or so cavities that are deep below the gum line. Dentist does not think it practical to fill so 2 or 3 teeth will have to be removed. I received 5 1st birthday cards. One year olds get very cute cards. I think I am among the very few who can actually read and appreciate their birthday wishes. Ray 
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#2
Thu Jul 2, 2015, 11:48 AM
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Happy 1st Birthday Ray
I had my 2nd birthday on June 25th. I have some problems with fatigue & muscle pains but thankful to be alive.
__________________
62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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#3
Thu Jul 2, 2015, 12:12 PM
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Congratulations, Ray! One year is a big milestone and having normal counts is a great achievement.
I don't think they can predict how long GVHD symptoms will linger, but you'll definitely feel better after a careful taper of meds is finally complete.
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#4
Thu Jul 2, 2015, 05:06 PM
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Congratulations on completing year 1 Ray. You have done a great job battling through that first year. Here's hoping for a completely healed year 2!
Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#5
Thu Jul 2, 2015, 05:32 PM
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That is great Ray. Your perseverance has been rewarding for you and all who have followed your experience. Thank you for posting all of your information this past year. Keep up the good work.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#6
Thu Jul 2, 2015, 05:45 PM
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Hooray!
Congratulations, Ray! It brought tears to my eyes when you mentioned that you got first birthday cards; how touching and so very meaningful. May you celebrate many more years!
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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#9
Fri Jul 3, 2015, 11:45 AM
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That's great Ray - congratulations. I wish you continued improvement and health. Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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#10
Fri Jul 3, 2015, 10:42 PM
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Congrats Ray and Vicki!
Glad to see you both made milestones! Hoping for continuing good health!
Tracey
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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#11
Sun Jul 5, 2015, 12:28 AM
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Happy Birthday, My personal experience with Dentists varies, 20 years ago when my dentist of several years retired I had a checkup at a recommended dentist and got mis diagnosis of gum disease and a recommendation of 4 quadrants of gum surgery. Lucky I went to a different dentist. The guy I've been going to the last 20 years has been great, explains what he is doing and is always up on the newest technology. I have all my teeth which I would did not expect at this point. Maybe a second opinion would be helpful.
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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#12
Mon Jul 6, 2015, 05:32 AM
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Congratulations, Ray! Well done. I like your honesty and admire your courageous spirit.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#13
Wed Jul 8, 2015, 02:03 PM
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BMB test results
I wish to thank all for their prayers, advice and congratulations.
As the doctor expected my BMB came out good. CHIMERISM RESULTS: Donor Alleles: detected Host Alleles: not detected No molecular evidence of residual pre-transplantation host cells is detectable in the CD3, CD33, and CD56-enriched cell fractions of the peripheral blood specimen from 07-01-15 by our PCR-based STR chimerism assay. These findings represent an increase from 70% donor cells in the CD3-enriched cell fraction and from greater than 95% donor cells in the CD33 and CD56-enriched fractions compared to the prior peripheral blood specimen from 09-18-14 (see MD14-3276). These findings are consistent with complete donor cell engraftment in all three cell lineages I had been concerned with the CD3 line. It all looks good now. Now all I need is a little better control on the GVHD. It may be improving slightly after restarting the Tac and Pred. Ray
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#14
Wed Jul 8, 2015, 06:54 PM
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Happy Re-Birthday!
__________________
Mother of 34 year old son who was diagnosed with MDS & AML at the same time. He underwent induction and 3 rounds of consolidation before having a MUD SCT on 8/28/14.
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#15
Thu Jul 9, 2015, 10:28 AM
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Congratulations Ray! So happy for you
 . Love your comments about the birthday cards my son is also nearing the one year mark.
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Fana,mother of asad age 8 diagnosed SAA 2014, trying to decide between ATG or BMT..decided on BMT and finally did it
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