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Old Wed Aug 1, 2007, 09:04 PM
Ruth Cuadra Ruth Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
Quote:
Did you stay near home for your transplant? Would you recommend someone going out of state for a transplant even if the local Dr.'s who specialize in BMT are saying the same things as far as current and future treatment plans?
Quote:
Barnes is a center of excellence and I am not sure what that means
Jill,

I'm just one of the regulars reading the forums and jumped in to add my two cents about transplant coordinators. Thanks for your kind words about my story and our website.

I did stay near home (if you call 35 miles away "near"--in LA we do!) for my transplant. My husband and I visited the Hutch in Seattle and considered what it would take to move up there for up to six months with two teenagers. We decided, without any regrets whatsoever, to stay at City of Hope where we were familiar, confident, and near family.

I think the location of transplant center is one of many issues that need to be considered. Often the decision is controlled by what insurance will pay for. Sometimes the choice is affected by the proximity to family. But it should also be based on whether your local doctors and transplant center are experienced in dealing with MDS. You want to be where they have seen and treated as many MDS patients as possible. The National Marrow Donor Program has statistics on transplants and outcomes by disease that can help you evaluate any center you might be considering. If the decision is made to go out of state for a transplant, you'll want to be sure that your local doctors will be able to work with a remote facility for followup care when you go home.

You should approach the phrase "center of excellence" with caution. Some organizations give this designation, but don't really evaluate them in any meaninful way. They do tend to be among the best centers, but I would look for a center designated by the National Cancer Institute (NCI) as a Comprehensive Cancer Center. The Siteman Center at Barnes-Jewish is an NCI-designated center.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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