Thursday, February 17, 2011

When to you seek out a CML expert ?

In the CML community, there is generally an acknowledgement that there are doctors who treat CML and then there are experts on CML. Most people who are diagnosed start Gleevec immediately, and usually have frequent blood draws the first month or two, and then a follow up Bone Marrow Biopsy at 6 months post diagnosis. This is pretty standard protocol. There are however doctors who don't follow the generally accepted protocol. If the patient demonstrates achieving the standard milestones at the prescribed dates, the risk to the patient is minimal, but if the results don't match the stated goals, there needs to be a closer look at the reason why and it's appropriate at that time to determine if a second opinion is in order.

Every list would of course vary, but in general the following people are generally on every ones list. I have been fortunate enough to be treated by both Dr. Deininger (when he was at OHSU) and Dr. Mauro at OHSU. In addition, I got a consultation visit with Dr. Druker. Anyone who is on a list in the same company as them, has to be in a class of those few that we would call 'CML Experts'.

Here is a list of some of the recognized CML Experts in the US.

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