Confused but hopeful

[DebS]

Hello,

I have been following marrowforums for a few weeks now. I am so moved by the bravery and friendliness that I see here. All of us struggle to do the best that we can--and we are all doing our best!!

My husband was diagnosed in Dec. 2012. We had our own "apocalypse" as it was on Dec. 21. We were and still are "deer in the headlights." He is currently being treated with Vidaza and that has gone fairly well. But we are being urged (pushed?) into a BMT. We thought that we would have some time to think about that, but his cytogenetics are not good. As you all know, it is quite a roller coaster ride and we are just starting.

I am encouraged by your stories and helping each other out. I hope to be encouraging as well. Right now, I am just confused. I have spent hours on the computer just trying to figure out the acronyms of the tests and what they mean! I am slowly putting things together now.

God bless all of you for your support. I don't know how to begin to thank Neil!

DebS

[Neil Cuadra]

Deb and Doug,

The world didn't end on December 21, 2012, as some people predicted, but your world certainly changed, didn't it? It's easy to understand that it might feel as though you were pushed onto the roller coaster going full speed. I hope we can help you feel more in control and steer you to useful resources.

Have you downloaded the MDS Foundation's Patient Handbook (http://www.mds-foundation.org/pdf/handbook-english.pdf) yet? Have you gotten the free information packet (https://www.aamds.org/patients/educational-materials) from the AA&MDSIF? They are both very useful when you are starting out, and especially when you want to understand treatment choices and the tradeoffs among them, not to mention the doctor lingo. There's a handy glossary here (http://www.aamds.org/glossary/terms).

Do you know what MDS subtype Doug has, and just how low his counts were? May I ask his age?

I'm glad to hear that Doug is responding to Vidaza. I hope he continues to improve. The transplant decision is always a tough one, especially when another treatment is working but may not work indefinitely and cytogenetics paint a less good prognosis. If you're going to go to transplant, the sooner it happens the better, so you'll want to know just how good a transplant candidate Doug is.

[DebS]

Thank you Neil. I will definitely download the mentioned items.

Doug is 61. I had that in the first post but neglected it when I edited. He has Intermediate II. I think that he is missing the 7th chromosome along with 3 and 5.

I do know that a transplant is the best scenario in most cases. However, we did think that we would have more time to consider our options. It is so hard now because he looks and feels well. But the doctors tell us that this is the optimum time for transplant because he is basically healthy.

We are trying to find our way through this. I can't tell you how helpful these forums have been. I will continue to follow them and now I know I am part of the group:)