Dr. thinks MDS has gone to AML !! Help !!

[annmonster]

Went to City of Hope today ..... my white cell counts are rising ...Dr. did blood tests and thinks that MDS/CMML has turned into AML .....chemotherapy will begin shortly as soon as insurance approves, bmb next week, transplant is in the works .... oh LORD, could this get any worse ????

Any of you folks have CMML that turned into AML ???

Thanks for any thoughts.... encouragement ...... or chocolate... ( kidding on the last one ) .

Ann

[Neil Cuadra]

Ann,

Was this the result of a single blood test or has your white count been rising over the last few CBCs? If they told you that they think that MDS/CMML has turned into AML then it doesn't sound certain yet. In any case, I'm very sorry to hear that it's not low-risk MDS as they once classified you.

If there's a silver lining it's that you are at one of the top treatment centers in the country, and City of Hope is a top transplant center too. Nobody wants a transplant if they can avoid it, but if you need one then you'll be going for the ultimate prize -- a 100% cure -- and I guess one could consider that to be good news too.

If you go to transplant who would your donor be?

[annmonster]

Neil ...

Thanks for your encouraging words......

My brother is not a match for transplant....so I guess Nat'l Registry will be the next step ...... do you have any idea how long that takes ???

Just curious.....

[Neil Cuadra]

Ann,

Based on your HLA type, they can easily look up whether or not there are matching volunteers in the bone marrow donor registry, so I expect you will know within a week or two after the doctor requests the search. They took only a couple of days to find two potential matched donors for my wife in the U.S. registry. They also search other registries around the world. If you know your HLA type, you can even search the U.S. registry yourself.

However, those are potential donors, and it can take months for the entire process of contacting, scheduling, and testing potential donors to see which of them are available, willing, medically qualified, and a confirmed match. The National Marrow Donor Program says this can take 2 months or more. Doctors routinely tell patients to expect the process to take 3 to 6 months because it sometimes takes that long. Finding matching cord blood units (rather than bone marrow or stem cell donors) is typically faster. In any case, the sooner they start the search, the better.

You can read more about this on the NMDP's The Search Process page.

[bettyliz]

My husband was diagnosed with MDS in July 2011 and then it turned to AML. he has been through the "consolidation" chemo then we went home for a few weeks, now back and getting some generous soul's stem cells on Wed. May 2 - two days from now. I am sitting in the hospital right now as is he. he is fine, tying flies for fly fishing right now. Joking around. It is overwhelming and scary, and you go from wanting to know everything to wanting to know nothing. Have faith. God will not forsake you.

www.sleist.blogspot.com

[annmonster]

thanks so very much bettyliz for sharing your experience with me .... I'll check out your blog.....and I do know that He won't forsake me .. ( it just feels like it sometimes ) : )