Just Diagnosed!

[kireton]

Hello Group!
I found this forum this evening while looking for information on MDS. I was admitted to the hospital a week ago after a blood test showed a low platelet count. I had started bruising easily about a week before. I have AML, M2 type. We are still waiting for the genetics tests to come back on the cells. But during all the testing it, we found out that I have MDS also, and have probably had it for a while. I am 42 years old and have really been feeling fine- so it has been a complete shock.
I am wondering how and if the MDS impacts the treatment for AML. I’ve been trying to learn more about this and would appreciate your feedback.
Thanks!

[camiboxer]

Welcome fellow Buckeye! Sorry for the route you had to take to get here. This forum is filled with a great group of caring and wonderful people who will be able to provide you with a lot of answers. Read thru the previous posts (days worth!) and you will be well under way to learning how to help yourself in this dreadful disease.
I can’t offer you any info on the impacts of MDS in regards to the AML but others will surely be able to offer valuable info.

[patti]

Kireton,

I know that there are more treatment options for AML then there are for MDS. There are also some people on the leukemia website who’ve had AML and MDS. That might also be a good place to check for info.

Take care.

Patti

[Suzanne]

I had both and the chemo used to fight the AML put me in remission for both. They continue to check me for any signs of either disease returning. So far I have been lucky and there are no signs if either. My next bone marrow test to check is scheduled for Dec. Good luck to you, the best advice I can give is to go to a center of excellence. There are so many new developments-some approved but many still in the trial stage that are giving people a much better chance then we had just a few years ago!

[Jerry]

Kireton …

Susi and I are both Buckeyes from the Columbus area. I go to Dr. Maciejewski at The Cleveland Clinic and think he is wonderful. I don’t know where you live, but that could be a choice. Relax and read all that you can about there diseases and pay no attention to the life span information that you see. Most of it is outdated and people are living much longer than ever before. Good luck …

Jerry

[Jimbob]

Kireton,
I was dx’d with CMML which is a type of MDS that is also myeloproilfic. It is non-treatable and non-curable but could “smolder” for years or go ballistic in months. They told me that mine was headed ballistic and there was nothing they could do about it. Through a number of alternative methods I was able to bring all blood counts into normal range but still had CMML. It was not until it became AML that they were able to cure it with a stem cel transplant.
At your age and feeling fine, you probably will get a good prognosis. Learn all you can so YOU can make the decisions about how you will beat the disease. There is a lot of information and support available through this forum’s members and, of course check the organizations home page as well as doing a google for AML or leukemia in general. BUT do NOT be taken in by poor prognosis. Most of the statistics are way out of day AND you are an otherwise healthy YOUNG man.
Hoping and praying that we will be hearing from you, as you get better, for years to come.
Jim

[kireton]

Thanks for the replies, especially you fellow buckeyes!
My husband and I are around the Cincinnati area. My doctors seem to be very agressive and pretty sharp. I finished my induction chemo yesterday (woo hoo!) and will have a bone marrow aspiration this thursday or friday. The doc’s here are affliated with several clinics of excellence and talk of sending me to Cleveland or Seattle for my BMT. So much to learn!
I continue to read some of the past posts for information.
Kim

[KWJ]

My dad is headed to The Hutch in Seattle in 2 weeks for a mini SCT. This is a scary time for sure, I wish you good luck.

[stocker1]

Hello
My name is George I have been in remission from AML luekemia for 15yrs. and have been diagnosed with MDS Just recentley. I dont know lf this helps you but there is hope of beating AML!!

[stocker1]

I forgot to tell you my age I am 51yrs old

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