On a beautiful crisp fall day, October 14th, we were blessed to have Dr. Jorge Castillo, from the Bing Center of Dana Farber, come to speak with us in Denver about WM.  He was fantastic!  We had 62 patients and caregivers present to hear him, share a breakfast snack, and integrate the newly diagnosed people into our group!  We are getting about 8-10 new patients each year and all of them love the camaraderie, the knowledge, the sharing of ideas and hope that our group provides. One of the new patients drove all the way from Santa Fe, NM to join us!

Dr. Castillo spoke about the diagnosis criteria, and what has changed over the last few years, especially of discovery of the MYD88 mutation. It's testing is now commonly approved prior to treatment. Even more, the discovery of the CXCR4 mutation may be also important in projecting treatment success, but isn't commonly approved by insurance.   He also talked about WM symptoms, whether or not to treat, and that every patient is very individual in the decision when to treat and what treatment is best. He reviewed all the current treatments & their success rates/issues, as well as new drugs coming down the pipe to us.  He also encouraged us to take advantage of the fact that clinical trials for WM are available and that can be managed right here in Denver, with the Colorado Blood Cancer Institute.   He had about 45 minutes of talk prepared, but we had lots of questions throughout, and kept him speaking for about 90 minutes.

It was so wonderful he would come all this way from Boston to speak to our group! We are lucky to have such giving doctors who will share their personal time with us, making us more empowered patients.

Cindy Furst
Colorado/So Wyoming Support Group