Advise on transplant center?

[SimonChai]

Hello, all. I was diagnosed with MDS three weeks ago and looking for some advice from this wonderful list.

I have an extremely high-risk case of secondary MDS with two chromosome abnormalities, and have been told I need a transplant ASAP. I am waiting to find out if my only sister is a match; I should know in another week.

Meanwhile, I’m trying to decide between Hopkins and Hutchinson, assuming we can find a donor who matches and that my insurance plan will cover both. I know everyone’s case is extremely different but wonder if anyone has any words of wisdom for me. I feel more comfortable with the style of the Hutchinson staff but going to Seattle would be somewhat harder logistically. On the other hand, I have a stronger support system there.

I’ve been reading more than posting since I joined this list several weeks ago. But I want to say that I think this list is fabulous and I appreciate all of you for your contributions. It’s so good to know there’s such a supportive group of people out there.

Thanks for any thoughts you may have.
Simon C.

[Christina]

Hi Simon,

I went to Fred Hutchenson a few months ago with my parents. My dad is RAEB-2 and they reccomend a transplant as well. I loved Hutchinson, however they wouldn’t work with my dad’s insurance. I think if we really fought it we could work it out. Sloan Kettering in NY already had the procedure approved. We decided to go with Hackensack University in NJ. Hackensack runs very similar to Seattle, the chief of the transplant team is from Hutch. I think the most important thing is how you feel about the facility. Follow your instincts! If you know you are visiting the top facilities ( and it seems you are ) follow your feelings. My father felt comfortable in his choice and I was relieved…can’t explain it I just knew that is were we should go. Good Luck!

[Sandy L]

Hi Simon,
Welcome to the list. I have no experience with either center. What do you mean that you like the style of the Hutch staff Did you have appointments at both facilities What Doctors did you see and what was the results of your Bmb? Do you have any chromosome abnormalitites? How old are you? Age plays a very important part of making the right decision. Good luck and post often, there is a lot of knowledgable people on this list.

[Sandy L]

Christina,

What doctors did you see at Hackensack? and at Sloan Kettering? I was thinking of going with Mike to talk to them before we make a decision to have the SCT at Sylvester Cancer Center (Miami) Correct me if I am wrong but the SCT on anyone over 60 is the new mini proceedure. Can you share with me what the doctor or the team told you there. When we went to Moffit Center everyone was nice but it felt very cold and frightening.

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