Info on mini stem cell transplant

[Birgit]

hi, I am looking for anyone who has any knowledge of patients who have had the mini stem cell transplant. What was it like, did it work? My mother was diagnosed in 02 with RA 5q-, trisomy 8, blasts 5%. She was tx dependant in 03 and was put on Revlimid. Aside from the horrible initial rash she did wonderfully and was tx free since then. She began dropping in all her counts to the point where they stopped her revlimid in 12/06 and now all of her counts are in the red zone as well as her 5q-, trisomy 8 and her blasts are up to 8%. We are now faced with trying another chemo and/or attempting a mini stem cell transplant. What are the srories out there of the success with this? She is in very good health otherwise and has always been a very active person. Thanks.

[jga_socal]

Just saw my second opin. doc at City of Hope Hosp in Duarte, Ca. They perform a ‘reduced intensity’ sct instead of a ‘mini’. Doc claims it is much less damaging in the long run than a full sct cuz there is no radiation involved. Yet it has similar outcomes as a full sct that typically includes full body radiation and chemo. The types of scts where they dont attempt to kill all the existing marrow cells are called ‘non-myeloablative’ (greek for ‘non marrow destroying’). The intent is to have the donor cells kill the patients bad cells.

You should definitely research each institution to find out what type of scts they perform. Get the success rates of their protocols from the following free publication at marrow.org. Choosing a Transplant Center: A Patient’s Guide.

[jaxem]

hi, 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!

[Birgit]

Jack,
what are the reasons for cord vs regular SCT? Do cords need to be a match in the 10 markers? My neighbor has a baby due in a week and wants to donate her baby’s cord but we haven’t been able to find out what to do. We are still awaiting results of the initial blood work for a match.
Thanks,
Birgit

[jaxem]

Birgit
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.

[jga_socal]

Birgit,
I think cords stem cells need only a 6 point match basically cuz of their better ability to adapt to sub-optimal conditions in the new host. The chance that your neighbors baby will be a match for your mama is still pretty small. You doctor will prolly conduct a search with the national marrow donor program ( http://www.marrow.org ). Also you and your neighbor should go to the Request Patient Materials page and order a ton of free materials about the transplantation process, how to be a donor, which hospitals have the best stem cell transplant success, etc.
Jim

[Birgit]

Thanks for all the info. I just got a ton of info from the marrow doner site. We are waiting to hear the initial results of the first search of the registry, so we’ll see. Can anyone tell me what sct’s cost and if ins covers them with MDS patients, or will medicare cover any of the costs?
Birgit

[moyeral]

Hi Brigit-

My grandmother is going in for her second SCT on 4 May. The first time she was not on medicare but her insurance did cover the entire cost. This time she is on medicare, however, the costs are being covered by her supplemental insurance. The treatment center took care of all of the preauthroization with the insurance companies both times. We did run into some issues the first time with medication once she came home, but the hospital social worker worked with us, her insurance and the drug companies to get the prices down to an affordable amount. This time around she has medicare part D and she is already in catastrophic, so we shouldn’t see an issue with the medication this time around. Hope this helps.

-April

[jaxem]

birgit

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.

[Birgit]

Thanks for all of the info. My mom is heading off to Italy on a cooking tour jacked up with antibiotic to ward off the bad bugs and lots of antibacterial lotion. When she returns she will begin Dacogen cycles. Her hgb/hct is holding steady, just those wbc/absolute neut/platelets are swinging low, so she still feels good. She is determined to make this trip. Revlimid gave her almost 5 years of great quality of life, hopefully Dacogen can do the same.
Birgit

[jaxem]

birgit
look into getting the dacogen rounds at home. very convenient getting it done once/day for 3 hours/day for 5 days. sure beats having to check into a hospital, however, the 1st round will probably be done in the hospital to check her reactions to the drug. you’ll probably need at least 4 rounds. please e-mail me for what has worked for us.

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