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#1
Sun Jun 29, 2008, 10:46 PM
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New Member/ Relieved to have found this site
Hello Everyone,
My Mom was diagnosed last Wednesday with MDS. As far as her counts and WHO rating, I'm not sure. Her hematologist told her that on a scale of 1-10 with 10 being the worst, she was a 5. He also admitted that he wasn't the best person to diagnose her and that she should see a doctor who researches/specializes in MDS at the Indiana Medical Center. My family will find out this week the severity and proposed treatment plan. I am so relieved to have found this site and have learned a tremendous amount of information in reading other posts on this sites. It has given me hope and made me feel like I am not alone, which I desperately needed after researching MDS through other sites. Thanks, Kim 
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#2
Mon Jun 30, 2008, 03:09 AM
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Hi Kim. Your mom's hematologist deserves a lot of credit for giving your mom an idea of what is wrong but recommending that she see someone with more MDS experience. That's excellent advice.
In what city is the Indiana Medical Center? I'm not sure what center you are referring to. If your mom is in Houston she can find MDS specialists at the MD Anderson Cancer Center right there at the University of Texas. Good luck to you and your mom. Please let us know what you learn at the next appointment.
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#3
Mon Jun 30, 2008, 12:05 PM
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Hello Neil -
I agree. I am very grateful that he recognized he isn't the best person to be dealing MDS and did send her to someone with more experience. I apologize. It was late last night when I typed my message and I left a few things out of my post. First, my mom is going to the Indiana University Medical Center in Indianapolis to see Dr. Larry Cripe. He is listed on the MDS Foundation's website along the Medical Center. It is a CoE. I am in Houston and the rest of my family is in Indiana. I would like for her to come here for treatment, but we are waiting to decide what to do until we have a more definite diagnosis and treatment plan. Thanks, Kim
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#4
Mon Jun 30, 2008, 01:14 PM
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I have seen his name before somewhere. He is a top researcher on MDS. See below.
http://clinicaltrials.gov/ct2/show/N...S%3AIN&rank=40 http://cancer.iu.edu/research/member...io.php?id=1169
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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