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patti
being a caregiver like you, i empathize with what you must be going through. hang in there. the best to you and your family.

[jaxem]

yeah, but you know, jga, donors are tough to come by & if you consider a double cord, you need to be down below 5% or it won’t take. i’ve heard of people over 70 getting cords & doing well w/ them. cords also have minimal gvhd impact too. once the disease progresses, then you need chemo and/or demethylating drug & the body begins to suffer & makes sct more difficult. like they say, everyone is different. Nothing easy w/ this disease.

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deltoid/mark

i read the Moffitt article & don’t see where it says it is effective w/ patients w/o -5q defect. i have heard of patients being given revlimid w/o the defect but only as a result of nothing else being available. deltoid, i’d ask her hematologist about giving her dacogen (decitabine) first. should be picked up by ins.

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deltoid
it would seem to me that cytology tests from a bone marrow biopsy should reveal the -5q defect or whatever the defect is. if you’re in AC, where are you going for your tests?

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my wife has mds & will be going to sloan-kettering in manhattan for a cord blood transplant once she gets into remission. contact the director, juliet barker (excellent clinician).

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katie
same thing happened to my wife; results were skewed in that flow cell cytometer recorded 2% blasts but visually (under microscope) looked more like 8%. another BMB taken about 3 days later recorded true blast count of 5%. I thought neupogen shots take effect quickly, last about a day or so. Neulasta shots last about a week.
jack

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ms chaitowitz

yes re reduced intensity or “mini” transplant. she getting the de-methylating drug Dacogen (decitabine) for 2 cycles (she’s in her 1st cycle now). after that, a BMB which hopefully will get her into remission (she had 5-8% blasts at last BMB). do you recall your blast %age prior to transplant? thanks for getting back to me.

jack

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hi, ms chaitowitz

my wife was dx w/ mds about a year ago. siblings & search failed to get a match but we found a match with a double cord as you had. great to hear you’re doing so well with it. sorry to hear about sarah’s husband. it’s such an incidious disease. my wife is 67 & we’re told that complete remission (<< 5% blasts) is required if the transplant is going to work. the transplant will be done @ Sloan-Kettering in NYC. the director there set up the program about 2 years ago and spent 9 years at Univ. Minn. my wife is going through dacogen treatment currently which i hope will achieve the total remission req'd. can I ask how old you were at time of transplant, degree of GVHD you went through, time you were tied to the hospital, amount of time doing blood checks, etc. thanks for your reply. i wish you all the luck in your fight. jack moreno

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