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Reply
Zoe,
I'm new to this forum thing as you can see by me "forgetting my name" :-)
Thanks for giving me feedback. I know we are good hands at the Cleveland Clinic but just think that a second set of outside eyes is never a bad idea when it comes to such a serious thing.
My mom actually had 2 BMB done last year at the time of her dx, one was done at the Cleveland Clinic and the other was at University in Cleveland. I think they knew what they were doing but yes she did have fibrosis.
She had Hodgkin's Lymphoma about 25 years ago so we think that the MDS may be d/t the chemo that she had at that time.
She started on Aranesp a couple of months ago but just stopped it d/t her EPO was 470? I don't understand why they stopped it.
I am a Nurse Practitioner myself and have gone to as many appts as I can w/ her but it's just hard since I'm 2 hours away from Cleveland and have a family of my own. (I live in Columbus)
Thanks for your help,
Kristen
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