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#1
Thu Oct 6, 2016, 10:23 PM
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Quick update
Just wanted to pass along news of my progress here. It has now been 2 years since I was told that I had redeveloped chromosomal abnormalities roughly 6 months after my transplant in February of 2014. It was an early relapse but I was given 6 cycles of Vidaza and started to improve from the very first dose. I had a pretty rough 2015 and spent about 90 days in the hospital with various infections, pneumonia, an indeterminate infection, and really bad pain in my hips and shoulder from avascular necrosis. 2016 has been much kinder to me as I have now had both hips replaced and both of my eyes have been corrected to get rid of cataracts that I developed from treatment.
Today I received the results of my most recent biopsy and it was good news all around. For the first time in 6 years, I had normal cellularity in my marrow. My marrow is 100% donor cells, there aren't any dysplastic cells, and there aren't any blasts. My WBC line finally has a normal number and percentage of lymphocytes - again for the first time in 6 years. RBC and platelets were normal as well. I know that it is still early in the game, but the results were nice to see. I am still working against some cGVHD issues in my gut, skin, and occasionally eyes and lungs I suspect, but overall have seen a lot of improvement this year and look forward to continuing toward normal, whatever that is. The reason I share this is that there have been a lot of members that have encountered difficulties after transplant with GVHD and relapse, and in some cases downstream problems like I have had with the AVN and cataracts. I don't regret the decision in any way, but it is a long road with lots of hairpin turns, so you don't always see what is coming at you.
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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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#2
Thu Oct 6, 2016, 10:37 PM
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Dan it is exciting to hear the good news. You have done well with the marrow problems since finishing with the Vidaza. I will have a BMB on Monday and I will ask for results the same as yours. Thank you for the update.
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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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#3
Fri Oct 7, 2016, 01:07 PM
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Thanks for posting - really happy you're doing well.
p
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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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#4
Sat Oct 8, 2016, 10:41 PM
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Well done, DanL! That's really good news.
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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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#5
Wed Oct 12, 2016, 07:55 AM
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Yay! Thats fantastic news. Thanks for sharing.
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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