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#1
Sat Jul 1, 2017, 06:33 PM
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Happy re-birthday to me
Today marks my 3rd re-birthday. the good news is all my numbers are in range or very close. The transplant took and I have no tests that would indicate MDS. My oncologist says he is always happy to see me because I am among the best living examples of a success story.
I still have mild to moderate GVH of eyes, mouth, throat, scalp. While annoying I have no problem living with them or taking the 31 pills I take every day. My more serious side effect of the transplant is the adrenal failure that was most likely from the mega doses of prednisone that I ingested. It leaves me felling dizzy for half the day and a blood pressure that swings wildly from 65 to 215. Doctors are trying to control with little success. Statistics say that without a transplant I would be pushing up daisies now. So I take what I can get, no regrets. 
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#3
Sun Jul 2, 2017, 01:40 AM
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Congratulations on the 3-year mark, Ray.
Nobody wants to be on steroids any longer than they have to, as you well know. I hope they figure out how to keep your endocrine levels in balance.
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#4
Sun Jul 2, 2017, 03:11 PM
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Congratulations!! I am so proud of your effort. I wish you many more of these birthdays.
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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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#5
Sun Jul 2, 2017, 10:45 PM
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Congratulations, rar. Well done! I love your positive attitude in spite of your health not being perfect.
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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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#6
Tue Jul 4, 2017, 06:53 PM
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Congratulations! Three years without relapse is a great accomplishment. As Bailie said, here's to many more!
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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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#7
Wed Jul 5, 2017, 02:11 PM
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Hi Ray, congrats on 3 yrs! I had my 5 in December for PNH. I still have some fairly mild GVHD, but it seems to be slowly going away. I feel abt 1000% times better than I did for a VERY long time when I had PNH but tried to ignore the systems until I couldn't ignore them any longer! We all wish you continued success in your recovery.
Mario
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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#8
Wed Jul 5, 2017, 04:21 PM
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Hi Ray, congrats on 3 yrs! I had my 5 in December for PNH. I still have some fairly mild GVHD, but it seems to be slowly going away. I feel abt 1000% times better than I did for a VERY long time when I had PNH but tried to ignore the systems until I couldn't ignore them any longer! We all wish you continued success in your recovery.
Mario
__________________
MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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