[californiamom]

Neil,

First thank you so much for all of your information.

The problem is we were told on my dad’s first diagnosis from his hemotologist that he was RAEB with about 18 to 20% blasts. Then when we went to Stanford to see about a SCT the hemotologist/oncologist said by reading my dad’s bone marrow tests in January, at first diagnosis, his blasts were at 1.8% and his bone marrow test in July after taking Vidaza were at 0%. He said my dad is considered RA because he doesn’t have any chromisomal abnormalities either.

I just feel like maybe we should take the approach of looking for new drug trials and MD Anderson seems to be the best place.

If anyone could recommend a doctor I would appreciate it very much.

I will ask his doctor about the flu shot as well, he’s never had it before except the reason he was diagnosed in January 2006 was because he came down with pneumonia and they took all sorts of tests. Since then he hasn’t had any problems except for a cat bite to the hand which swelled his hand up pretty good.

Thank you for patience, it’s still a little new to us and I’m always looking for information.

[californiamom]

Thank you so much for your answers. I know everyone is different and I think that’s what makes it so hard. He’s been doing so well on the Vidaza, but we wanted to see if anyone had suggestions about lowering the dose, there isn’t much information about long term use. My dad doesn’t have any chromosome abnormalities and is in good health, we just worry about the flu season.

Thank you again and good luck to you all.

[californiamom]

Hello Everyone,
Thank you for the much needed encouragement that there is some hope out there and the doctors aren’t always exactly right. I’m glad to hear that you have all surpassed your prognosis and I will definitely pass this along to my dad. I may have needed the information more than he did.
We live in the Bay Area and he did see a doctor at Stanford called Dr. Steven Cohan, who he waited over three hours passed his appointment to see and when he did finally come in, he didn’t have anything nice to say and was so matter of fact. I know this disease doesn’t have anything nice about it, but they can have some bedside manners. I will tell him about the two doctors that were recommended at Stanford for future reference.
I really appreciate all of your emails and will be on the forum for more information. Thank you all again.

[Author]

Posts