LGL - might have MDS now - Dr. Sokol at Moffitt Ctr in Tampa????

dadoftwins

ugh - here we go again.

 

Quick overview - Hubby diagnosed Dec 2012 with LGL Leukemia.  Started with Methotrexate & high dose Prednisone.  helped initially to increase hemoglobin, but not a sustainable treatment.

Moved on to Cyclosporin A.  no results.  3rd attempt was Campath, injectable.  Did it for 6 cycles - absolutely nothing positive, in fact, his Hemoglobin went down and white counts climbed, along with LDH - 320+

 

Now the docs are pursuing something called MDS - myelodysplastic syndrome.  anyone heard of it?  any one have it??  Since LGL is a problem with the white blood cells, we now think hubby has problem with the red blood cells.  Some call MDS cancer, some call it Pre-cancer, some call it a blood disorder.  I call it SCARY!!!!

 

Please - looking for anyone to share this new issue with.

 

Hubby has 3rd bone marrow biopsy this Friday, OCt 11th. 

 

Our docs at OSU are recommending we go see DR. SOKOL at Moffitt Cancer Center in Tampa.  Any one have luck there?

 

scared - so very scared to be possibly facing a third cancer (hubby also has Cutaneous Tcell Lymphoma)  that's what got this whole nightmare started - a small skin cancer.

 

ugh

help

 

thanks

amy