View Single Post
  #3  
Old Mon Nov 28, 2011, 12:06 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Nadia,

I'm surprised you haven't had a transfusion yet with platelets that low. What are your other counts like?

Were you diagnosed after a bone marrow biopsy? Assuming so, did the doctor explain what your biopsy results were? Do you know what MDS subtype you fall into?

As Dick says, "Watch and wait" might be fine for now -- some people live normally with fairly low counts -- but if your counts stay dangerously low and you start requiring regular transfusions then it's not a great long-term plan. You could use the time to solicit other second opinions.

The NIH is very organized and the doctors very attentive (I was impressed too!) but their goal is research so there's a built-in bias toward trials. For some trials they want patients who have not had previous treatments, in other words people like you. What does your own hematologist say about having you take Campath under a trial vs. taking the already approved meds: Vidaza, Dacogen, or Revlimid, and about those vs. watch and wait?

Did the NIH give you information about the tradeoffs involved in choosing a clinical trial? You can also read Clinical Trials: Are They Right For You? How hard would it be for you logistically since you live on the other side of the U.S.?
Reply With Quote