View Single Post
  #18  
Old Thu Dec 1, 2011, 09:41 PM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Pinebluff!

Like Karen, I hope you'll keep your conversation in the public forum. I've been reading it religiously, but Darice is doing such a good job offering advice and support that I haven't jumped in. It's a very, very interesting case, and, based on what I've read, if I were in your shoes, I'd be ready to tie my Dad's hematologist to a rail and drag him out of town.

As others have said, based on what you have given us so far, this looks like a lower-risk MDS. Even the dysplasia (messed up baby blood cells) noted in the biopsy report isn't all that dramatic. I agree with Darice's scoring of the IPSS, unless you can find a section of the biopsy called "cytogenetics" or "karyotype" and share whatever's in there.

It does seem like the Vidaza was pulled too quickly, but, given the low blast count and the lower-risk profile, I'm not sure why he was on Vidaza in the first place.

You really need a second opinion from an MDS specialist, though I understand why that's hard to get done.

It's mostly infections that kill people with MDS, along with internal bleeding from low platelets. It would be good to get your Dad's WBC count up with the Neupogen or Neulasta.

Good luck to you both!

Greg
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
Reply With Quote