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#1
Wed Jan 14, 2015, 11:29 AM
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Four years since transplant!
i am 4 years post transplant. I continue to deal with gvhd of skin and eyes. I have steroid induced high eye pressure and dry eye. May have to have eye surgery to reduce pressure. I continue to tire and require short naps. Life is good nonetheless! Ahhhh 4 years!
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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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#2
Wed Jan 14, 2015, 05:43 PM
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Lori,
Congratulations on the 4 year anniversary!
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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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#3
Wed Jan 14, 2015, 06:31 PM
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Hurray and happy rebirthday!!!
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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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#4
Wed Jan 14, 2015, 07:58 PM
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Congrats on 4 yrs!!! I just had my 3 yr for PNH. I had a good match and have had fairly mild GVHD. I am not taking any steroids anymore, but I am taking a med usually pres for leukemia and a few other things. I hope that you continue to do well.
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#6
Thu Jan 15, 2015, 11:01 PM
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Great news, Lori! We need all the positive stories we can get on this forum. Happy birthday from me too.
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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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#7
Fri Jan 16, 2015, 07:48 AM
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Congratulations and happy 4th re-birthday! I remember reading your story over the years and being inspired by your strength. Keep on fighting!!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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#8
Mon Apr 6, 2015, 08:05 PM
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Karin early on your path
Hi Lori. It seems Karin (friend and mother of my kids) who is 52 is on a similar path. She recently had induction chemo at UNM Hospital for Acute Myeloid Leukemia that developed from MDS just when we thought we were going for a unrelated donor BMT at Methodist Hospital in San Antonio TX. 28 days from start of chemo is April 13th when a marrow biopsy is scheduled. Karin has had PNH for 26 years, severe AA since July 2013, low grade MDS for a while. Currently she is discouraged because neutrophils are not recovering and the hematologists are talking about needing 1000 neuts for a sensible marrow biopsy (to indicate < 5% blasts i.e. AML in remission). Karin concerned that BMT slipping further and further into future. Cannot see how a severe AA patient can muster 1000 neuts. Did you get your BMT (or SCT) even though you could not show AML in remission? Thanks and congrats on 4 years post BMT.
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#9
Wed Apr 29, 2015, 01:12 PM
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Congratulations, Lori! I just came on the forum, the first time in a long time. It is funny how after remission and the restoration of health, you kinds of back away from constant reminders of illness.
I hope that your GVHD has subsided, especially your eye issues. I also hope that you are still out there on your motorcycle!!! WOOHOO!! PTL
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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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#10
Thu Apr 30, 2015, 09:42 AM
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Congrats on your re-birthday!!!!!!!!
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#11
Wed Nov 18, 2015, 09:59 PM
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Congratulations on your 4th birthday! I have enjoyed reading about your positive journey. I just joined the forum and would love to know of any supplements that you have found helpful. My father was newly diagnosed with MDS. Thank you
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