My Mom has MDS

[TommyEspo]

Hello Everyone,

My mom was just diagnosed with MDS after a marrow biopsy. According to the test results her IPSS Score puts her in the Intermediate 1 catagory for risk. She has an appointment with a specialist and will have her tests redone soon. Our family has been reading everything we can find and it looks like my mother is a good candidate for a transplant. She’s young (51) and has overall excellent health. We have been advised that it will take months to find out any donor database results and that we shouldn’t get our hopes up. We are trying to be pro-active in our quest for a match which leads me here. I have a few questions and hopefully your group experience can guide me. Here is some information about my mom:

1. My mother is Costa Rican. She was adopted by an american family at the age of 12 weeks.

2. There is a high likelihood that she has a sibling living somewhere in Costa Rica.

My questions are regarding her ethnicity and the chances of a match:

A. Does the ethnicity of a perspective donor play a definative role in the likelihood of a match? We have a large Costa Rican community in our area and have considering bringing our quest to churches in the area. Is this worth while?

B. Are sibling matches normal? We have the means to hire someone to locate her brother in Costa Rica. Should we pursue this?

C. Does anyone have any suggestions for other websites that I can visit to pose these same questions?

I thank you all for your time and any help that you can provide.

Sincerely,

Tom Esposito
Westbury, NY

My mother was diagnosed with MDS 04/2008

[Russ P.]

Tom, Check with a good hemo/onc as there other options like using stem cells from a placenta or an autologous transplant which doesn’t use a donor. Try http://www.LLS.org for info.
Blessings and prayers for your mother.
Russ

[eve]

tom

what is the name of the doctor your mother is going to see

eve

[TommyEspo]

Hi Eve,

I believe that She has an appointment to see a Dr. Silverman at Mt. Sinnai later this month.

Have you heard of him? A friend of the family works in hemotology / oncology field and recommended Silverman over Raza at St. Vincents because of his program’s focus on treating MDS specifically rather than cancer in general. Have you any idea if that’s accurate? Any help would be appreciated.

-Tom

[eve]

tom i sent a personal message to your e-mail

eve

[poppyshope]

Tom, I know for a fact that in three weeks they had a match for my father for a Bone Marrow Transplant. They also had, as back up if the donor opted out, a stem cell too. He was at Sloan Kettering in NYC, and they worked quickly- he just could not get into remission. Before he passed away we talked to the transplant team and they were saying how lucky he was to have found a donor and they did say it was because he was from Eastern European Descent- Good Luck- and we will all keep you and mom in our prayers…I will tell you I would try and get her to MD Anderson in TX or Dr. Estey in Seattle he was at MD Anderson- Jen

[jaxem]

tom
yes!! ethicity has everything to do with finding a match. people in western europe tended to roam around a lot whereas Scandinavians & Japanese didn’t. I’m not sure about central america but descendancy lineage seems minimal with the extent of the number of Indians in the area only several hundred years ago. I’d recommend (1)look for the sibling; if can’t find, (2)have your medical institution do a research in the international registry (browse National Marrow Donor Program), and if these fail (3) research doing an umbilical cord blood transplant especially if your mother is small in body area. As stats go, only 30% find a donor in (1) & (2) above. Find out her MDS type, ie RAEB, blast %age, any displastic cells, etc. Jochim Deeg from The Hutchinson Clinic (quite a reknowned guy) had a great discourse on the above in a telephone conversation I participated in last summer. although a number of institutions are doing them, I would avoid a “haplo” or 1/2 match transplant at this time.

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