Day 105, Part 1
First thing yesterday, Seattle time, I got a call from the doctor heading the radioactive antibody trial there. I suspect the first thing he did when he returned to town was to call me. We didn't connect until 5, but that's pretty good service for a doctor in these days of "managed care" (a term that should be added to the list of oxymorons). He was familiar with John's case and very helpful in explaining the history, rationale and pros and cons of the trial.
Basically, they have tried forms of radioactive particles attached to antibodies for many years. About 10 years ago, they started focusing the approach on leukemia as a way of getting enough radiation to the right places to perhaps cure the disease with less damage to the rest of the body. Until several years ago, they only used this technique in conjunction with traditional chemo and total body radiation - adjusting suspenders while still wearing a belt.
About 3 or so years ago, they decided to rely on the antibody approach, with minimal chemotherapy, on patients that were too old or ill to handle large amounts of chemo. They have tried this with about 35 patients and had good results. From what I've read and heard, "good" is a relative term. All but 4 patients have been over 50 and most have had problems that prevented use of lots of chemo, such as heart conditions, liver damage and such. From what little I've found about the earlier trials, they have had patients die from relapses, complications, infections and other things, but overall, they think the results have been a significant improvement on the current standard, which is basically to nearly kill the patient with chemo and total body ratiation, in hopes that the leukemia dies first.
Here, they are able to leave the patient well and strong enough to fight off some of the things that kill them because they are weak. The results have been encouraging, but the doctor was still cautious because of the small number of patients and the short time they have been trying this without massive chemo. I believe the longest, so far, that anyone has survived disease-free after this has been 15-18 months and still going. In the long term, having less chemo could also help avoid things like secondary cancer caused by the treatments.
If you think about it, unpleasant as it may be, the current approach to treating leukemia is the "modern" equivalent of blood-letting. In fact, they still actually do that for a few patients. Given the concept and the marginal success rates they have, 30 to 50% for AML, it makes sense to look for ways to attack the leukemia more directly. This treatment does kill all the marrow stem cells, thus requiring a transplant, but with John's dysplasia, that would be necessary anyway.
We meet this afternoon with Dr. K to get his perspective on all this. I'm sure he is familiar with the process and his opinion counts a lot, especially to John. I think his input will be the last factor to consider in deciding where to do the transplant and what process to use. He will have a letter from Dr. Maris to discuss. I do wonder, however, at why we weren't given a copy of the letter, which seems an odd sort of ettiquite to me.
I asked the doctor from Seattle if he had seen and had any thoughts about the donors that have been identified. He hadn't seen the information that was supposed to have been faxed while we were in Seattle, and I got the impression that it wasn't in the file. He said that clinics don't usually comment on such things until a case has actually been transferred. The ethics of that seem odd to me.
Anyway, we will know more by the end of today.
Basically, they have tried forms of radioactive particles attached to antibodies for many years. About 10 years ago, they started focusing the approach on leukemia as a way of getting enough radiation to the right places to perhaps cure the disease with less damage to the rest of the body. Until several years ago, they only used this technique in conjunction with traditional chemo and total body radiation - adjusting suspenders while still wearing a belt.
About 3 or so years ago, they decided to rely on the antibody approach, with minimal chemotherapy, on patients that were too old or ill to handle large amounts of chemo. They have tried this with about 35 patients and had good results. From what I've read and heard, "good" is a relative term. All but 4 patients have been over 50 and most have had problems that prevented use of lots of chemo, such as heart conditions, liver damage and such. From what little I've found about the earlier trials, they have had patients die from relapses, complications, infections and other things, but overall, they think the results have been a significant improvement on the current standard, which is basically to nearly kill the patient with chemo and total body ratiation, in hopes that the leukemia dies first.
Here, they are able to leave the patient well and strong enough to fight off some of the things that kill them because they are weak. The results have been encouraging, but the doctor was still cautious because of the small number of patients and the short time they have been trying this without massive chemo. I believe the longest, so far, that anyone has survived disease-free after this has been 15-18 months and still going. In the long term, having less chemo could also help avoid things like secondary cancer caused by the treatments.
If you think about it, unpleasant as it may be, the current approach to treating leukemia is the "modern" equivalent of blood-letting. In fact, they still actually do that for a few patients. Given the concept and the marginal success rates they have, 30 to 50% for AML, it makes sense to look for ways to attack the leukemia more directly. This treatment does kill all the marrow stem cells, thus requiring a transplant, but with John's dysplasia, that would be necessary anyway.
We meet this afternoon with Dr. K to get his perspective on all this. I'm sure he is familiar with the process and his opinion counts a lot, especially to John. I think his input will be the last factor to consider in deciding where to do the transplant and what process to use. He will have a letter from Dr. Maris to discuss. I do wonder, however, at why we weren't given a copy of the letter, which seems an odd sort of ettiquite to me.
I asked the doctor from Seattle if he had seen and had any thoughts about the donors that have been identified. He hadn't seen the information that was supposed to have been faxed while we were in Seattle, and I got the impression that it wasn't in the file. He said that clinics don't usually comment on such things until a case has actually been transferred. The ethics of that seem odd to me.
Anyway, we will know more by the end of today.
