Transplant process will start August 14
News flash! Last week’s phone calls and emails have borne fruit: Dr. Andersson presented my case to his colleagues in the Bone Marrow Transplant group on Tuesday (day before yesterday); he then spoke at length with Dr. Giles, who in turn spoke with Dr. Tucker yesterday morning. Dr. Tucker then told us when we saw him at noon yesterday; and Dr. Andersson called me late this afternoon to confirm and expand a bit more. So here’s what I know:
The transplant process will begin on Monday, August 14. Sometime during the previous week we’ll need to be in Houston for various tests and other preliminaries. At the same time, my brother Peter will be there having stem cells “harvested” from his blood—an amazing, beautiful gift of love that just plain beggars the word “donor.” Thank you, Peter, thank you. I love you. Millions of Peter’s stem cells will be infused into me after my own bone marrow has been killed off by another round of systemic chemotherapy. They’ll use a combination of drugs for this chemo: busulfan and fludarabine, a combination they’ve been working with at M.D. Anderson for the past ten years as a “milder,” less risky alternative to older methods of killing off the bone marrow in preparation for transplant—uncluding such methods as Total Body Irradiation, which, thankfully, will not be used in my case. Dr. Tucker says the experience shouldn’t be all that different from the chemo I just went through—minus the diarrhea and the radiation recall reaction, thank you very much!!—but I’ve learned that it’s best not to form too many expectations that my response on one occasion will be like my response on another occasion. Better to just go along for the ride and keep visualizing the destination. I’ll be in the hospital for a month; we’ll then stay in Houston for at least another 100 days, during which I’ll make daily visits to the clinic as an outpatient for monitoring and testing and adjustment of various drug dosages, for transfusions, and so forth. And then, if all goes well, we’ll be able to come home in mid- or late December.
Both Dr. Giles and Dr. Andersson were at pains to emphasize what Anna and I had already figured out: that there are no data on cases like mine. There just haven’t been any. Andersson can’t remember any in the past ten years. He said there might be one or two if they looked 20 years, but there’s no point in doing that—the treatment protocols in place then have very little in common with the ones in use today. This is frightening—who wants to be this unique?!—but I find it reassuring to have it out in the open. It makes me feel that the process is more accessible to me and Anna: we’ll be working with the doctors, not just being worked upon by them.
There’s lots more to learn, and many details to be worked out about where and when and what. Eric, the Lead Transplant Coordinator, is out of the office this week, and I imagine he’ll have a lot of things to catch up on when he gets back on Monday; I probably won’t know much more until late next week.
Meanwhile, I’ll have weekly “maintenance” doses of chemotherapy to the spinal fluid, which means a weekly lumbar puncture; the first one is scheduled for tomorrow afternoon in Dr. Tucker’s office. I’ll continue trying to build my strength while we do our best to plan; and of course we’ll continue to see our friends and soak in all the wonderful energy coming from so many wonderful people.
More soon.
The transplant process will begin on Monday, August 14. Sometime during the previous week we’ll need to be in Houston for various tests and other preliminaries. At the same time, my brother Peter will be there having stem cells “harvested” from his blood—an amazing, beautiful gift of love that just plain beggars the word “donor.” Thank you, Peter, thank you. I love you. Millions of Peter’s stem cells will be infused into me after my own bone marrow has been killed off by another round of systemic chemotherapy. They’ll use a combination of drugs for this chemo: busulfan and fludarabine, a combination they’ve been working with at M.D. Anderson for the past ten years as a “milder,” less risky alternative to older methods of killing off the bone marrow in preparation for transplant—uncluding such methods as Total Body Irradiation, which, thankfully, will not be used in my case. Dr. Tucker says the experience shouldn’t be all that different from the chemo I just went through—minus the diarrhea and the radiation recall reaction, thank you very much!!—but I’ve learned that it’s best not to form too many expectations that my response on one occasion will be like my response on another occasion. Better to just go along for the ride and keep visualizing the destination. I’ll be in the hospital for a month; we’ll then stay in Houston for at least another 100 days, during which I’ll make daily visits to the clinic as an outpatient for monitoring and testing and adjustment of various drug dosages, for transfusions, and so forth. And then, if all goes well, we’ll be able to come home in mid- or late December.
Both Dr. Giles and Dr. Andersson were at pains to emphasize what Anna and I had already figured out: that there are no data on cases like mine. There just haven’t been any. Andersson can’t remember any in the past ten years. He said there might be one or two if they looked 20 years, but there’s no point in doing that—the treatment protocols in place then have very little in common with the ones in use today. This is frightening—who wants to be this unique?!—but I find it reassuring to have it out in the open. It makes me feel that the process is more accessible to me and Anna: we’ll be working with the doctors, not just being worked upon by them.
There’s lots more to learn, and many details to be worked out about where and when and what. Eric, the Lead Transplant Coordinator, is out of the office this week, and I imagine he’ll have a lot of things to catch up on when he gets back on Monday; I probably won’t know much more until late next week.
Meanwhile, I’ll have weekly “maintenance” doses of chemotherapy to the spinal fluid, which means a weekly lumbar puncture; the first one is scheduled for tomorrow afternoon in Dr. Tucker’s office. I’ll continue trying to build my strength while we do our best to plan; and of course we’ll continue to see our friends and soak in all the wonderful energy coming from so many wonderful people.
More soon.
posted by John Slatin at 9:43 PM
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