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#1
Fri Jan 11, 2013, 08:39 PM
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Two Year Birthday!!
Hello to all fighting these horrific diseases. I am 2 Years Old today. Hopefully those of you are struggling can see success in this posting. I will never be as I was prior to being sick, but the Good Lord must have more plans for me since I am still here. I still battle graft vs. host of the skin which my Doctor says will eventually burn out. I had graft vs host of the eyes which are tolerable with cauterizations of tear ducts and restasis. There are still things (illnesses) out there that can cause problems, however I am being treated to prevent some of them while my cells and skin are at odds.
I would never have made it this far without 1) God, 2) Excellent Doctors and Nurses, 3) my loving family (including my brother for his stem cells), great friends and this forum. May Blessings go out to all of you here.
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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
Fri Jan 11, 2013, 08:58 PM
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Congratulations, Lori. Post like yours give us hope. So happy for you.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#4
Fri Jan 11, 2013, 10:38 PM
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Hooray for Lori!
If you go back and read some of your own posts here you'll find some of the same concerns, before and after transplant, that other forum members are currently expressing. You've done what many want to do - fight and succeed. My wife no longer has MDS but like you she has after-effects of her transplant. She also has the rest of her life ahead of her, and I'm so glad that you do too. Keep taking care of yourself and thanks for being part of this community.
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#7
Thu Jan 17, 2013, 07:40 AM
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Congrats Lori, that really does give us hope. I just found out yesterday that I am headed for a transplant. I am 50 years old and the youngest MDS patient my doctor has. I am also scared like crazy. It would be nice to talk to someone my own age who has gone through this.
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Tammy, age 50; Diagnosed MDS Deletion 5Q- in 2008; Currently on Lenalidomide.
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#8
Thu Jan 17, 2013, 12:16 PM
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Belated Happy, Happy rebirthday, Lori! Hard to believe it's been two years already.
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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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#9
Thu Jan 17, 2013, 03:03 PM
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Thank you all! It has been a hard journey, but worth it to be able to spend more time with my family.
Tammy: Let me know how you want to talk. We can do email or? You should read my caring bridge dealy too.
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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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#10
Sat Jan 19, 2013, 07:46 AM
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Thank you Lori, I just found out this week that my meds are no longer working and I have to have a transplant. I am really scared!. Thankfully I have a match with one of my sisters so that part is taken care of. I also have the most incredible support system here with family and friends. I would love to chat with you. Email would be great. What is the caring bridge?
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Tammy, age 50; Diagnosed MDS Deletion 5Q- in 2008; Currently on Lenalidomide.
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#11
Thu Jan 24, 2013, 10:08 AM
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Tammy, Here is the link to my input on caringbridge.
Caringbridge.org/visit/loripatrick It is a journal of sorts of my journey.
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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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#12
Tue Jan 29, 2013, 11:01 AM
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I'm a bit late but I wanted to wish you a belated happy rebirthday, Lori! It's a big milestone and is such a celebration of all you've been through.
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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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