Forum Replies Created
-
AuthorPosts
-
jaxem
Memberbirgit
i believe about US$20K was alloacted for reserving a double cord (only the cords) which was picked up by her supplemental ins. not medicare. i’m not exactly sure how costs share for this (or do i care as long as it’s covered). there is a ton of $ req’d for mds treatment.
Memberhi, beth
welcome to the groupmy wife & I are in your age group & I can sympathize with what you & your husband are going through. snoop around the forum & come back with your questions. I learn a lot from it!
Memberalex
most of us here are not hematologists but i wonder why revlimid? that’s usually used on patients with a -5q chromosone defect. did they mention anything about a chemo regimen or demethylating agents such as vidaza or dacogen to stem the blasts? any talk about doing a stem cell transplant (stc)? how much (in %age) is a “huge” amount of blasts?Memberjune
tylenol & benedryl are standard treatments during tx’s. vidaza is good but don’t forget to consider dacogen which was approved last year.MemberBirgit
when you can’t find a donor & are small enough in body size, a cord transplant is viable. the match doesn’t have to be quite as stringent as cord stc are more adaptable, however, the 1st 100 days post transplant is a critical time. post transplant issues such as GVHD are lessened with cord stc’s also. usually most hospitals can advise you how to donate cords. you can also browse NY Blood Center for more info. MH Sloan-Kettering & Hackensack in your area are doing them.Memberhi, birgit
i see you’re from toms river, not too far from me. biggest thing with a sct is finding a donor. any luck with that? I’m surprised & a bit disappointed that revlimid didn’t keep your mom in remission. this is a terrible disease!Membertypically they are usually from low platelet counts. get it checked out!!
Memberjeff
my wife went through same ordeal as yours, just about 5 years to the day she dx mds. she’s also on decitabine since 2/07 w/ semi-weekly clinic visits incl. transfusions. decitabine is normally on a 6 week duration & you need at least 4 rounds of it for it to take hold. never heard of increased dosage w/ it; supposed to be given per body mass. may I ask your wife’s age?russ
i believe the 7-3 chemo age limit is under 60; there’s another chemo regimen for older patients (to age 65)called MEC.Membershar
any cell defect is a bad thing and the -5q defect is a cell abnormality with a better prognosis than others. i’m no hematologist & you can “google” or use your browser, or search on this website for more info on that or your mom’s RCMD which is less than 5% blasts & less than 1000 monocytes in marrow, and abnormal cells in 2 or more bloodlines (red, white or platelets).Memberjen
my wife aged 66 went through same thing but did not fair so well w/ induction chemo per heart issues. now going through dacogen rounds which is easier than chemo. everything w/ this disease is a long road. my wife was dx in 2/06. sounds like she ‘s going through a standard chemo routine prior to sct. she’ll do fine. try not to be so worried.MemberJune
bring everything up to your dr. very few institutions do them. there may be a size of patient restriction as you can only get so many stem cells out of umbilical cords. gvhd is lessened compared to conventional marrow donor stem cell transplant. patient needs to be in remission for it to work.Membergail
i’ve read many of your mom’s posts & followed her health history. So sorry for your loss. She’ll be remembered!jack
Memberdeltoid
celgene will pay?? trial?? change health insurance?? you’re in AC and not that far from good clinics in Philly. you need to go to a good clinician to get her checked thoroughly w/ a bone marrow biopsy done 1st. i’m not that far away from you & willing to help.Memberjga
you’re right about the size thing. however, almost all cord transplants being done are double cords where they match up (as close as possible) 2 cords. it’s supposed to be better than a single since the dis-similarities in the 2 cords will bolster the cells (I guess kind of like a Cane & Able thing) to become a stronger unit in the long run. doesn’t hurt to check it out. good luck to you!!Memberjen
basically, mds is having less than 20% blasts in marrow while aml is greater. my wife developed mds from chemo given after breast cancer surgery. her blast level was @18%, pretty close to the 20% barrier. she has no bm donors available but we’re trying for a double cord sct, however, she needs to get below 5% blasts if the transplant is going to work. she is currently at around 5% & doing rounds of dacogen. what did they tell you her chances were before she developed aml? may I ask how old she is?kwj; really sorry about your dad.
-
AuthorPosts
