I started this blog to keep my friends and family informed about my progress with Chronic Myelogenous Leukemia (CML). I was diagnosed with CML on March 3, 2006 after having some blood work ordered by my ophthalmologist. I am going to be tracking my progress throughout my treatment. I invite you to comment.
Thursday, May 19, 2011
Portland in the Spring
So my wife and I recently returned from our annual trip out to Portland to meet with Dr. Brian Druker and Carolyn Blasdel. We usually try to make this an extended trip since it is such a long plane ride. Since we have another trip planned over the summer, we made it a quick two-day mini vacation for us. Portland in the spring is usually quite beautiful. That was not the case for this trip and we hit cold and rainy weather.
My visit with Dr. Druker and Carolyn went quite well. I am progressing exactly as they had hoped. Due to my low numbers and time since diagnosis (5 years) the chances of any recurrence of the CML is quite low and grows lower with each passing day. They kept me on my dosage of 600 mg of Gleevec for now. Even on this lower dosage, my numbers have been good.
We had a discussion about a European study where some patients were taken off Gleevec altogether. Although this was a smaller study, about half the patients were able to remain off medication without a return of symptoms. The other half had a return of symptoms and went back on Gleevec. Fortunately, almost all of them went back to a positive response when the medication was restarted. Essentially, what this might indicate is that for some people, Gleevec might be curative, while for others, it might be a maintenance medication. This is a radical shift in how people are thinking about this type of treatment. Due to the lack of research at this point, no changes were proposed, but it is interesting to watch the next phase of research in this field.
I did receive my PCR from the Oregon lab after we got back. My number was 0.004. This was consistent with my previous findings at this lab and remains a major molecular response. I always find it interesting that my blood work at Dana-Farber comes back undetectable, but the Oregon lab seems to find a couple of cells. This has to do with the sensitivity of the PCR test and the particular lab where it is performed.
Anyway, towards the end of our brief trip, my wife and I did the Chocolate Walking Tour of Portland. We had a fun time, although it was raining and freezing. We tasted a lot of chocolate and I never realized the varieties of chocolates out there. The most interesting was a chocolate flavored balsamic vinegar. Who would have thought that this would taste good.
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3 comments:
Jon,
Despite the weather a great doctors appointment is always something to celebrate and what better way then with chocolate.
It is interesting hearing about people who have come off the TKI's and are doing well. Maybe someday we all can come off the drugs and not have to worry.
Enjoy your good news,
Chuck
We always love hearing about your great results Jon!!!!! Chocolate
balsamic vinegar...oh my!
Wanda & Dan
Dang! I was jusr in Portland, too. Would have loved to take the Chocolate Tour with you!
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