Best AA Treatment Dr's. / Centers?

[David M]

Hello All,

I am located near Huntsville, Alabama.

What is the best AA treatment center (and/or recommended AA doctor) that is a reasonable distance for me? Any ideas?

Thanks!

[Neil Cuadra]

The UAB Comprehensive Cancer Center at the University of Alabama Birmingham is the best-known major treatment center near you. If your insurance lets you go out of state, there's also the Vanderbilt-Ingram Cancer Center at Vanderbilt University in Tennessee.

[David M]

I actually live in TN and work in AL. My insurance covers both facilities.

I know UAB and Vanderbilt are both very good medical facilities, and I know that they treat people with AA, but to my knowledge they do not have doctors that specialize in AA. Some on the forum have strongly suggested that I somehow hook up with doctors like Dr. Brodsky (JHopkins) or Dr. Young (NIH), etc., who specialize more in AA and MDS... but these people are pretty far away from me distance-wise.

I am scheduled to go back to a doctor at Vanderbilt later in Jan. 2010. I don't have a problem with that, but I just want to make sure there isn't somewhere else I should try to be going that might be more geared toward AA.

I know they do quite a few BMTs at Vanderbilt, but less than 6% (according to info on their website) are AA related -- should this be a red flag to me? Vanderbilt is in Nashville, and it is relatively convenient for me and my family. If I ever need a BMT, it would be the best place (location-wise) for my support network... but are there better places for AA that I should consider -- even though they may be further from my family (i.e. those who would be taking care of me)?

Just weighing the options...

[JEZ]

I have AA and have been under the care of Dr. Melissa Baird since December 2006 when I was first diagnosed at UAB. When diagnosed, I was 56 years old. She is a physician in the Hematology/Oncology department at Kirklin Clinic at UAB. I have been, and continue to be, very pleased with the care I have received. I do not know UAB's success rate with BMT and you may want to explore that. My treatment has consisted of ATG and cyclosporine (Neoral). I achieved normal blood counts gradually over two years. I recently was switched to Imuran (generic form) instead of Csa when I developed kidney toxicity. My platlets have dropped to 71K but all my other counts have stayed at normal or just barely below. My kidney function returned to normal. So I am happy with how Dr. Baird has responded to changes in my status. If I ever did need to consider a BMT, I would not necessarily automatically have it done at UAB. I would explore the success rates at other facilities with my age group and compare to UAB before I decided. I know Dr. Baird would agree with this approach. Hope this is helpful. Best wishes in your journey... a knowlegable doctor you trust is important. I do not know how many other AA patients Dr. Baird sees but she consults other Doctors about my case.

JEZ

[Neil Cuadra]

Originally Posted by David M

I know they do quite a few BMTs at Vanderbilt, but less than 6% (according to info on their website) are AA related -- should this be a red flag to me?

David,

I think that's to be expected because AA is a rare disease. If you study the National Marrow Donor Program's transplant statistics for major transplant centers and look at the summaries by disease, I think you'll find similarly small percentages of AA-related transplants at other centers as well.

[paulallen]

My wife is currently being treated for SAA at Vanderbilt under the care of Dr. John Greer. We are from Eastern Arkansas. We have had a wonderful experience with Vanderbilt. Right now she is undergoing immunosuppression, she received ATG (horse) and is currently on Cyclosporine. If she has to get a BMT we will go there as well. He did tell us that they do very few transplants for AA and the transplants they do for AA most are for children. I am very confident in their ability to handle the BMT and I trust Dr. Greer.

Since we live about 3 hours away, she sees a Dr. here for her CBC's and transfusions when needed. And we are able to have open communication with Dr. Greer and his assistants instantly through their patient website. I can send him a message and usually get a response within an hour or so or if it is something urgent we can call and speak to someone immediately.

[towncarlady]

I noticed that you are from eastern Arkansas. I grew up south of Little Rock. Now I am in the Birmingham area. UAB is an excellent medical center. I have just changed my insurance so that I can have more choices in specialists. My first child was born with aplastic anemia. I have MDS, diagnosed in 2008. Best wishes! By the way, my maiden name is Allen.