April 3, 2001
Hi All,
Wanted to share the latest with you. Dave had his one-year post-transplant check-up on March 5th, during which the doctor did a bone marrow biopsy. We got the results back on the 21st, and there were Philadelphia (Ph) chromosomes present (the Ph chromosome is the chromosome that causes a CML patient's body to produce too many white cells). Aside from that, Dave is in great shape!
We went back to Boston yesterday, and Dave has entered a clinical trial with the drug STI571 (now also known as Glivec). This is a drug that was introduced about 2-1/2 years ago, and specifically targets and kills off the cells containing the Ph chromosome, while not causing side effects or hurting other cells. The study is expected to last about 18 months. Because this is a clinical trial (and because Dana Farber is a good hospital in general), Dave will be very closely monitored. He'll have to have blood work done once a week for the next month, then every other week after that. We will need to go to Boston once a month so Dave can be checked out and to pick up the next supply of pills (since it's a clinical trial, the drugs are not available by prescription). Biopsies will be done every 3 months.
The presence of the Ph chromosome does not mean that Dave has relapsed. If left untreated, he would go into full-blown relapse in a few months. Rather, the doctor said the cells that cause the disease are there, but the disease hasn't resurfaced yet. Currently, Dave has two sets of cells working in his body -- his original cells (not all of them were killed off during the chemo and radiation prior to the transplant), and his donor cells from Jon. It's taken a year, but Dave's old cells have reared their ugly heads again, and that's what is showing up in the biopsy. The donor cells don't recognize the Ph chromosome cells as foreign, since they were present in Dave's body when the donor cells were introduced. STI will beat back the cells with the Ph chromosome, allowing the donor cells to take over, giving Dave a healthy blood supply.
The other treatment option right now is DLI, the donor lymphocyte infusion of cells from Jon, Dave's donor brother. This is the route Dave's doctor was advocating about 6 months ago, but which we declined. (Dave would have been part of a study, and depending on which side of the study he was on, he could have ended up getting GVHD, or graft vs. host disease, which we've been trying to avoid since the initial transplant). When we declined this back then, we knew it would be an option in the event of relapse, and we figured that the way research was going, there would be new options to consider. With six more months of research results, Dave's doctor feels very strongly that STI is a better course of treatment right now. DLI carries the risk of GVHD, STI does not. And, to use his words, the results of the STI studies have been "phenomenal".
So we're giving STI a try. All the research I've found has been positive. Remission rates are greater than 90%. Also, the STI studies have currently only been open to people who could not or chose not to have a transplant. Dave is only the 11th patient at DFCI who is being treated post-transplant, so we're on the edge here! So that's the latest. Dave's doctor is VERY optimistic about this course of treatment, and so are we. We'll keep you posted as we get information. And as always, if you have questions, don't hesitate to ask.
Allison