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#1
Fri Apr 16, 2010, 02:08 PM
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Pre-bmt...what questions to ask
I have my initial consult with a BMT specialist next month and am seeking advice on what questions I should ask. Assume I know nothing (which isn't too far from the truth). thank you!
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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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#2
Fri Apr 16, 2010, 05:00 PM
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There are many questions to ask and I found getting the pamphlets from the marrow.org website helped with what questions to ask, etc.
Otherwise...What conditioning are they recommending? How long do you have to remain close to the hospital? How close do you need to remain? How long will you be hospitalized? What are their rules with what foods you can't eat. What medications will you have to take and for how long? What do they do to treat/prevent GVHD? How often will you be monitored, have appointments, etc? I will try to think of more for you. There are very many questions that could be asked. I would definitely go to the marrow website and get their handouts! Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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#3
Tue Apr 20, 2010, 09:51 AM
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At Stanford I was given a Blood and Marrow Transplant Handbook, actually a huge, very organized binder filled with all the needed information. They might give you something like this at your consult appointment. My husband and I both had to read the handbook and then at our consent meeting next week, we will be asked to sign a form saying that we have read it.
Best of luck with your appointment. Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58  , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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#4
Tue Apr 20, 2010, 11:29 AM
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Like Jill, I too was given a big book that helped answer a lot of my questions, things I hadn't even thought of. It's actually written by my post-transplant nurse specialist at Kings, Michelle Kenyon, and I love her to bits!
The "7 Steps" book is available as a free pdf downolad here.
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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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#5
Tue Apr 20, 2010, 08:16 PM
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Thank you so much for the PDF reference. I know it will be very helpful.
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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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#6
Tue Jun 1, 2010, 05:07 PM
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my first appt at transplant unit today
Thanks everyone for being so informative! I'm sure I'll feel even better after this appointment today, and all my many questions answered.
Mausmish, hope you are going ok through the process! Jules
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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