October 16, 2001
Hi All,
Wanted to send you the latest news. As you may remember, when we were at Dana Farber in September, the doctor did a bone marrow biopsy to measure the extent of Dave's leukemia. You may be scratching your heads, thinking, "didn't they already send a message in July and say there was no sign of the disease?"
Yes, we did. But what we didn't know at the time was that the doctor only ran 2 of 3 tests, since Dave had only been on Gleevec for 3 months, and he didn't really expect to get such good results. The third test is the most conclusive, and the one that really tells us what's going on.
So we sent an e-mail off to the doctor to see if he'd gotten the results back. He had, and here's what he said in response to our question about what percentage of Dave's cells were positive for the Philadelphia chromosome (the indicator of his disease), and where do we go from here:
O% WERE pH POSITIVE; DAVE HAS A COMPLETE CYTOGENETIC REMISSION; WE CONTINUE THE GLEEVEC AND RE-CHECK A MARROW IN 6 MONTHS
Complete cytogenetic remission are the key words here. Up until now, the doctor would not say Dave was in any phase of remission. Complete cytogenetic remission is the what the medical community says instead of cure. They don't like to use the word cure because with cancer, you never know if it's really gone, and they don't want patients thinking it will never come back.
There are markers for the disease still in Dave's body, but those markers don't mean he will relapse. 65% of patients with the marker don't relapse. Here's how the doctor described it to me today. People who have had chicken pox have the chicken pox virus in their bodies. They may or may not develop shingles (caused by the chicken pox virus), but the virus is still there. In Dave's case, the markers are still there, but he may not ever relapse.
Dave will continue to take Gleevec, but at a reduced dosage, and we'll go back to Dana Farber in 6 months instead of 4, at which time another bone marrow biopsy will be done to make sure things are still in check.
Hope this finds you all well.
Allison