Day 56
It’s been a week now since I last filled you in, and John has been handling the effects off his chemo well. He has been eating well, perhaps even gaining a bit of weight. He has had no signs of infection, which would mean immediate hospitalization. The only sign of the effects he has shown is occasional irritableness and some desire to get out a bit, both of which hint at some fighting back going on inside.
John’s blood pressure remains good. His white count is now down to 500, mostly lymphocytes, which is the low goal they desire from the treatment. His platelets were low and he had to have some infused Friday. He had two pints of blood on Sunday, which took most of the day at the hospital.
We met Friday with Dr. Cai (“Chi”) at Emory to discuss the possibility for a bone marrow transplant there. He was part of the team that treated John when he was hospitalized. He described John’s diagnosis as “AML from MDS” (Acute Myeloid Leukemia from Multi-Dysplasia Syndrome). That means that his precancerous white cells had probably been present for some time and had turned into AML, probably about the time he began to have stomach problems in the early Fall. AML is fairly rare. It is unusual in young people, and MDS is even rarer in someone of John’s age. In a sense, this should give John the best shot at successful treatment, because he is strong and otherwise healthy with no organs damaged by age or disease. On the other hand, he will get the only treatments they have to give, which don’t work a lot of the time and have long-term side effects he will have to live with, though we hope for a lot longer than most patients survive. Cai added that John has normal chromosomes and his platelets do not look misformed.
The MDS means that John cannot have an “autologous” transplant, where they filter his own bone marrow stem cells to try and remove the leukemic ones, because they would be putting back his own precancerous ones. Since Courtney is not a match, his only alternative is an “allogenic” transplant from an unrelated donor. Cai said that John has a 90 percent chance of finding an acceptable donor, and they have identified 28 likely candidates from the national bone marrow donor database, six of whom they have “activated”, or asked that the national center contact. One of the group had already been contacted and had to be ruled out as a donor. He had gotten a tattoo recently.
According to Dr. Cai, about 60% of unrelated bone marrow donor recipients develop some degree of GVHD. The chief problem with bone marrow transplants is GVHD, or Graft versus Host Disease, where the new immune system rejects the body it is put in. Suppressing it, at least too much, defeats the purpose of the transplant. They rate the disease on a scale of 1 (chronic with dry eyes, skin thickening, etc.) to 4 (acute with rashes, extreme diarrhea and organ damage). Patients with mild GVHD actually have better outcomes than those who have none, apparently because the new white blood cells finish the work of the chemotherapy by killing off any remaining leukemia cells. Fortunately, relatively few patients have severe GVHD, about 20%, because the treatment given is harsh and their “mortality” rate is high.
There are problems other than GVHD that happen with bone marrow transplants. All in all, the best clinics have outcomes of around 50 percent. Dr. Cai said Emory uses the same protocols as in Seattle, but he did note that the outcomes there have been as high as 70%. The national bone marrow center publishes detailed statistics on outcomes from various clinics, through 2002, and they are revealing. They suggest that patients request updated statistics from clinics they are considering. Unfortunately, Emory says they don’t have any updates. I do know that they have had a near complete turnover in staff in the past year or two and have some doctors that seem very good. The published statistics for Emory, however, were mediocre overall and poor in cases like John’s. Emory won’t do a second transplant if the first fails or if there is a relapse. They also won’t do some high risk transplants.
When they find a donor, they get an updated medical history and check a blood sample using the most recent techniques. They make sure the person is healthy and then notify the donor’s clinic. It takes a week of treatment for the recipient to be prepared. The chemo and radiation treatments are more severe and are meant to cause a bone marrow “ablasion” that completely kills off the its cells. The donation takes place during that time and is flown to the clinic where the transplant takes place. The patient stays in the hospital for about 3 weeks while the marrow “engrafts” and then has to stay nearby and be observed closely for 6 months or so. After a year the patient can sometimes go off some or all of the steroids and other immune suppressants. A normal life though is unlikely.
We will fly to Seattle on February 2 and meet with the Fred Hutchinson staff there the next day for John’s evaluation. The next week, John will start his next round of chemotherapy. He will probably need one or two more after that before his transplant.
I’m tired but glad to be taking care of John. Debbie and I are able right now to go to work and carry on life pretty well. If John is lucky, he could be able to begin thinking, but not much more, about life again somewhere beginning a year from now. It’s easier to think about the day and to do what is needed then. The time and the risks between now and then are weighty thoughts to bear.
Courtney is back at school. She went with a group skiing last weekend and ended up snowbound for an extra day. Fortunately, she said Pepperdine declared last Monday a “rain day” and called off classes. No wonder she likes life in Southern California!
Thanks to each and all for your care.
John’s blood pressure remains good. His white count is now down to 500, mostly lymphocytes, which is the low goal they desire from the treatment. His platelets were low and he had to have some infused Friday. He had two pints of blood on Sunday, which took most of the day at the hospital.
We met Friday with Dr. Cai (“Chi”) at Emory to discuss the possibility for a bone marrow transplant there. He was part of the team that treated John when he was hospitalized. He described John’s diagnosis as “AML from MDS” (Acute Myeloid Leukemia from Multi-Dysplasia Syndrome). That means that his precancerous white cells had probably been present for some time and had turned into AML, probably about the time he began to have stomach problems in the early Fall. AML is fairly rare. It is unusual in young people, and MDS is even rarer in someone of John’s age. In a sense, this should give John the best shot at successful treatment, because he is strong and otherwise healthy with no organs damaged by age or disease. On the other hand, he will get the only treatments they have to give, which don’t work a lot of the time and have long-term side effects he will have to live with, though we hope for a lot longer than most patients survive. Cai added that John has normal chromosomes and his platelets do not look misformed.
The MDS means that John cannot have an “autologous” transplant, where they filter his own bone marrow stem cells to try and remove the leukemic ones, because they would be putting back his own precancerous ones. Since Courtney is not a match, his only alternative is an “allogenic” transplant from an unrelated donor. Cai said that John has a 90 percent chance of finding an acceptable donor, and they have identified 28 likely candidates from the national bone marrow donor database, six of whom they have “activated”, or asked that the national center contact. One of the group had already been contacted and had to be ruled out as a donor. He had gotten a tattoo recently.
According to Dr. Cai, about 60% of unrelated bone marrow donor recipients develop some degree of GVHD. The chief problem with bone marrow transplants is GVHD, or Graft versus Host Disease, where the new immune system rejects the body it is put in. Suppressing it, at least too much, defeats the purpose of the transplant. They rate the disease on a scale of 1 (chronic with dry eyes, skin thickening, etc.) to 4 (acute with rashes, extreme diarrhea and organ damage). Patients with mild GVHD actually have better outcomes than those who have none, apparently because the new white blood cells finish the work of the chemotherapy by killing off any remaining leukemia cells. Fortunately, relatively few patients have severe GVHD, about 20%, because the treatment given is harsh and their “mortality” rate is high.
There are problems other than GVHD that happen with bone marrow transplants. All in all, the best clinics have outcomes of around 50 percent. Dr. Cai said Emory uses the same protocols as in Seattle, but he did note that the outcomes there have been as high as 70%. The national bone marrow center publishes detailed statistics on outcomes from various clinics, through 2002, and they are revealing. They suggest that patients request updated statistics from clinics they are considering. Unfortunately, Emory says they don’t have any updates. I do know that they have had a near complete turnover in staff in the past year or two and have some doctors that seem very good. The published statistics for Emory, however, were mediocre overall and poor in cases like John’s. Emory won’t do a second transplant if the first fails or if there is a relapse. They also won’t do some high risk transplants.
When they find a donor, they get an updated medical history and check a blood sample using the most recent techniques. They make sure the person is healthy and then notify the donor’s clinic. It takes a week of treatment for the recipient to be prepared. The chemo and radiation treatments are more severe and are meant to cause a bone marrow “ablasion” that completely kills off the its cells. The donation takes place during that time and is flown to the clinic where the transplant takes place. The patient stays in the hospital for about 3 weeks while the marrow “engrafts” and then has to stay nearby and be observed closely for 6 months or so. After a year the patient can sometimes go off some or all of the steroids and other immune suppressants. A normal life though is unlikely.
We will fly to Seattle on February 2 and meet with the Fred Hutchinson staff there the next day for John’s evaluation. The next week, John will start his next round of chemotherapy. He will probably need one or two more after that before his transplant.
I’m tired but glad to be taking care of John. Debbie and I are able right now to go to work and carry on life pretty well. If John is lucky, he could be able to begin thinking, but not much more, about life again somewhere beginning a year from now. It’s easier to think about the day and to do what is needed then. The time and the risks between now and then are weighty thoughts to bear.
Courtney is back at school. She went with a group skiing last weekend and ended up snowbound for an extra day. Fortunately, she said Pepperdine declared last Monday a “rain day” and called off classes. No wonder she likes life in Southern California!
Thanks to each and all for your care.
