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.

Tuesday, February 8, 2011

To my friends and family - Thank you !

I saw this article below, and it struck me how fortunate I am, and how fortunate Tyler was. I hear this often from people dealing with cancer, that many times friends and even family don't know how to respond and even distance themselves. We even heard that at Tyler's memorial service, someone who had difficulty in knowing what to say.

I had a co-worker and friend who shared with me how difficult it was to even talk about it after my diagnosis, and instead it actually became difficult to have any conversation since it was hard to figure out the right conversation, does one talk about or doesn't one...And if you don't talk about it, then does it become obvious that you're avoiding it....You get the drift, it becomes a vicious circle.

So I want to thank our friends and Tyler's too. That was one of our topics on a Portland road trip, how fortunate both of us are. We have wonderful families, and an incredible network of supportive friends. While I don't say this often, I thank everyone for their support and understanding. I think the past month has been the most difficult of this entire journey. Tyler's passing, while ever so slightly easier to deal with each day, still is just right under the surface, and I find missing him many times a day.