New MDS girl

[covergirl]

Hello to all,
I am pretty much newly diagnosed MDS. I am a 46year old African-American female w/Int.-1 RARS. Since Jan 2005 illness w/March 2005 diagnosis, I have had 6 transfusions(2units each). Will be starting a 5day treatment of ATG next month. Long-term goal is to get me to bone marrow transplant with Viadaza treatment. My only sibling, my brother, did not match, however, 5-6 of 6 matches found in BMTprogram.
I have felt ok, only missed days of work for transfusions. Weird to have a disease as I have been the caretaker of my family.
Just really into the research stage and am glad to have found this forum. I intend to be a regular member.
To all I thank you in advance for the info you have and will share on this forum and wish us all success on this new journey. Your posts are preparing me.

[Carrie]

covergirl,

Welcome to the board. I’m sorry you have to be here. But if you have to be somewhere, I’m glad it’s here.

My dad has a different kind of MDS so I can’t really relate much to your circumstances.

He has been and will probably be still be treated with Vidaza, though.

I hope you gain a lot from the wonderful people on this board.

Love,
Carrie

[Kathryn]

Hey, I just wanted to welcome you as well… You have definitely come to the right place! This is a very supportive & informative forum..

Best wishes to you,

Kathryn

[covergirl]

Thanks Kathryn and Carrie. Just found this forum this morning and already I have learned a lot.. I plan to check at least once a day.

[Marsha]

Covergirl,

Welcome, you are not alone, even tho alot of us have different sub-classifications of MDS are worries and questions are the same. Looking forward to hearing from you again.

God BLess, Marsha

[shirlsgirl]

Welcome aboard!!

[frank]

where are you getting ATG?

just welcome to the forum, thanks for posting…

Frank

[sarah]

Welcome to forum

[Terri]

Welcome, and wish you well

[Suzanne]

welcome Covergirl, You are not far away. Where are you being treated? Have you been to a center of excellence for MDS? It can make a real difference. Glad to see that you have one of the types of MDS that is supposed to be easier to live with.

[covergirl]

Hi Suzanne,
Many thanks to you and all for your warm welcome. I am being treated at MCV by Dr. John McCarty. I am not sure if it is a center of excellence for MDS, but Dr. M teaches Dr’s about MDS and is on par with the lead Dr.’s at Duke and John Hopkins. I am comfortable with him and have heard great things about him via a family member in the pharma industry.
How do you know you are at a center of excellence for MDS
I am so new to do this I don’t even recognize I have type MDS that is supposed to be easier to live with. Through the grace of God, I just live…one day at a time.
Again, thanks for the welcome and heads up.

[Suzanne]

Living a day at a time is a good way to deal with this disease! To be a center of excellence I think the institution needs to treat a certain number of MDS patients and also be doing research in the disease. There is a list on the main part of this site. You doctor sounds great.If he is at a par with doctors at Duke and Hopkins-both centers of excellence , you are well taken care of. Luckily you are young enough to look at a transplant. they have made so much progress with doing those successfully that you could have real hope of a cure.

[covergirl]

This Forum is wonderful. I feel like I have met 1000 new friends.
Thanks for making this new life experience hopeful.

[Author]

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