Day 96
It might be easiest to summarize today's visit at Fred Hutchinson here in Seattle by saying that I don't think John has his mind made up yet on whether to have his transplant here or at Emory. I understand, I think and it really is his call to make.
We had a remarkably well orchestrated greeting, consultation and tour at the Center this morning. It's really a world class as a facility, a touch like a hospital in the interior, but staffed with casual West Coast type people. I got the impression at times that this is where the best and brightest go to start their careers and where the Nobel winners and those who have procedures named after them come back. Oh, and it sits two blocks from the harbor, so...
I had three questions in my mind for the "intake" doctor that we met with for consultation. He had reviewed the file well, but Emory had not gotten him the truly important information on the potential donors, so we weren't able to discuss the merits of each. Debbie was able to call and put some pressure on Emory, but we will have to wait for the written report for that aspect of advice.
The discussion went through the course of treatment to date, with the same conclusion that Emory has come to; that is, that John had Myleodysplasia (MDS) for some time and that it developed into AML. The likely reason he has not bounced back from the first consolidation is the same, MDS - his stem cells aren't forming blood cells as they should. There was more about platelet abnormalities and other vagaries that seem like adjectives for describing wines, but the point was that my first question was answered. They agreed that, while MDS at his age is very rare (MDS is rare at any age), Emory's diagnosis seems validated.
The answer to my second question was whether to go through the "traditional" several rounds of consolidation chemo or, as Emory says, move to a transplant now. The answer, at least to that specific question, was clearly yes. He said that there isn't enough evidence that the extra chemo would help, at least in his case (it can cause tissue damage) and, most importantly, it extends the period that someone like John would be subject to potentially fatal infection.
Although not in sequence, it was interesting that the doctor was remarkably frank about John's chances. Other's have talked about "chances of successful treatment for a year or more" or even about "high likelihood of mortality", but he looked directly at John and said that only about 30% of patients with your condition, while generally older, survive. That is hard for anyone to hear, particularly at John's age. He followed by other statistics that were actually worse, but they don't bear repeating.
I took the time to talk about the most recent published statistics, both overall and by center, first of all hoping to brighten the outlook for John a bit. I suppose 50/50 survival for a year or more could be considered "the glass is half-way from being completely full" things, but the latest overall statistics are about even for John's situation, and probably better, given his age. Seattle's statistics are closer to 60%, and I found it interesting that neither this doctor nor the doctors at Emory have looked at that data. It may be because quantifying subtleties of cases can be hard. I know statistics for winning a legal case exist, but I tend to treat those as only one consideration in deciding how to handle it, so I shouldn't be surprised. Parents, though, probably want something concrete to hold on to at this point.
My third question was whether Seattle thought that Emory could do basically as good a job as they could. I've heard Emory's response, which is that both use the same protocols and Emory bills itself, according to one person, as "The Hutch East". The statistics don't bear that out, but I wanted to hear the answer from this side. What we got, however, was something of a curveball instead.
I've read a lot of the literature, but I've only seen one mention of a different protocol, referred to as "1803", that the doctor suggested we consider. It involves a radioactive isotope of iodine attached to an antibody that is targeted to leukemia cells. This has allowed them to use a much lower dose of the final "ablasion" chemo and radiation to kill off the "old" bone marrow, without all the harmful, long and short term side effects. They call that "low dose conditioning." If all goes well, it is done basically on an outpatient basis, with only 3 to 5 days in the hospital. The transplant follows and can actually be done several days later outpatient, as well.
Prescription medicine ads have fine print and so does this. It has been tried mostly on older patients who have been too at risk to take high dose chemo and radiation. Of the 32 patients (a small number), 21 of whom have remained disease free (65%). The longest so far is only 15 months, but the mortality curve does start to settle out at about a year. That means it is fairly new, not widely used, pretty promising, but the long term results aren't known yet.
To add to the uncertainty, there have been only 3 younger patients tested. Two are alive and well and one died of an infection that seemed to be unrelated. Small numbers, but with similar percentages, but not for long periods. To go this route, or simply to come here and follow the strong conditioning approach, we might be a month or so before starting. Emory probably could start sooner, which is important for someone without an immune system and a risk of relapse. Either approach will require about the same period of time for treatment and recovery - 3 to 4 months of careful treatment and then response to whatever the level of graft versus host disease that follows, whether acute in the 6 month's range or chronic and long-term.
Apart from the considerations of location, Seattle versus home, and the known versus the unknown, there is a lot to weigh in a very short time. Timing is critical. Chemo and radiation have toxic effects and, paradoxically, often cause cancer over time, as was the case recently with Susan Sontag. Targeted radiation isn't proven, but the current massive dose approach isn't that successful to start with.
Anyway, there is a lot to think about. One interesting thing of note. The preferred means of delivering drugs and such these days is intraveneously through a "Hickman" line, which is plug put in your chest, rather than the port that John has currently in a vein in his arm. Dr. Hickman comes in regularly here and installs Hickman lines himself in patients. Impressive, but so are their three Nobel laureates.
I could go on and on and back and forth, but it is late and the plane will be early. I'll try to fill you in on more and on housing and such later. For now, I just think about how parents are supposed to know what the right thing to do is whenever there is a hard decision. I wish I knew and I wish I knew what to say to help John decide the right thing to do.
We had a remarkably well orchestrated greeting, consultation and tour at the Center this morning. It's really a world class as a facility, a touch like a hospital in the interior, but staffed with casual West Coast type people. I got the impression at times that this is where the best and brightest go to start their careers and where the Nobel winners and those who have procedures named after them come back. Oh, and it sits two blocks from the harbor, so...
I had three questions in my mind for the "intake" doctor that we met with for consultation. He had reviewed the file well, but Emory had not gotten him the truly important information on the potential donors, so we weren't able to discuss the merits of each. Debbie was able to call and put some pressure on Emory, but we will have to wait for the written report for that aspect of advice.
The discussion went through the course of treatment to date, with the same conclusion that Emory has come to; that is, that John had Myleodysplasia (MDS) for some time and that it developed into AML. The likely reason he has not bounced back from the first consolidation is the same, MDS - his stem cells aren't forming blood cells as they should. There was more about platelet abnormalities and other vagaries that seem like adjectives for describing wines, but the point was that my first question was answered. They agreed that, while MDS at his age is very rare (MDS is rare at any age), Emory's diagnosis seems validated.
The answer to my second question was whether to go through the "traditional" several rounds of consolidation chemo or, as Emory says, move to a transplant now. The answer, at least to that specific question, was clearly yes. He said that there isn't enough evidence that the extra chemo would help, at least in his case (it can cause tissue damage) and, most importantly, it extends the period that someone like John would be subject to potentially fatal infection.
Although not in sequence, it was interesting that the doctor was remarkably frank about John's chances. Other's have talked about "chances of successful treatment for a year or more" or even about "high likelihood of mortality", but he looked directly at John and said that only about 30% of patients with your condition, while generally older, survive. That is hard for anyone to hear, particularly at John's age. He followed by other statistics that were actually worse, but they don't bear repeating.
I took the time to talk about the most recent published statistics, both overall and by center, first of all hoping to brighten the outlook for John a bit. I suppose 50/50 survival for a year or more could be considered "the glass is half-way from being completely full" things, but the latest overall statistics are about even for John's situation, and probably better, given his age. Seattle's statistics are closer to 60%, and I found it interesting that neither this doctor nor the doctors at Emory have looked at that data. It may be because quantifying subtleties of cases can be hard. I know statistics for winning a legal case exist, but I tend to treat those as only one consideration in deciding how to handle it, so I shouldn't be surprised. Parents, though, probably want something concrete to hold on to at this point.
My third question was whether Seattle thought that Emory could do basically as good a job as they could. I've heard Emory's response, which is that both use the same protocols and Emory bills itself, according to one person, as "The Hutch East". The statistics don't bear that out, but I wanted to hear the answer from this side. What we got, however, was something of a curveball instead.
I've read a lot of the literature, but I've only seen one mention of a different protocol, referred to as "1803", that the doctor suggested we consider. It involves a radioactive isotope of iodine attached to an antibody that is targeted to leukemia cells. This has allowed them to use a much lower dose of the final "ablasion" chemo and radiation to kill off the "old" bone marrow, without all the harmful, long and short term side effects. They call that "low dose conditioning." If all goes well, it is done basically on an outpatient basis, with only 3 to 5 days in the hospital. The transplant follows and can actually be done several days later outpatient, as well.
Prescription medicine ads have fine print and so does this. It has been tried mostly on older patients who have been too at risk to take high dose chemo and radiation. Of the 32 patients (a small number), 21 of whom have remained disease free (65%). The longest so far is only 15 months, but the mortality curve does start to settle out at about a year. That means it is fairly new, not widely used, pretty promising, but the long term results aren't known yet.
To add to the uncertainty, there have been only 3 younger patients tested. Two are alive and well and one died of an infection that seemed to be unrelated. Small numbers, but with similar percentages, but not for long periods. To go this route, or simply to come here and follow the strong conditioning approach, we might be a month or so before starting. Emory probably could start sooner, which is important for someone without an immune system and a risk of relapse. Either approach will require about the same period of time for treatment and recovery - 3 to 4 months of careful treatment and then response to whatever the level of graft versus host disease that follows, whether acute in the 6 month's range or chronic and long-term.
Apart from the considerations of location, Seattle versus home, and the known versus the unknown, there is a lot to weigh in a very short time. Timing is critical. Chemo and radiation have toxic effects and, paradoxically, often cause cancer over time, as was the case recently with Susan Sontag. Targeted radiation isn't proven, but the current massive dose approach isn't that successful to start with.
Anyway, there is a lot to think about. One interesting thing of note. The preferred means of delivering drugs and such these days is intraveneously through a "Hickman" line, which is plug put in your chest, rather than the port that John has currently in a vein in his arm. Dr. Hickman comes in regularly here and installs Hickman lines himself in patients. Impressive, but so are their three Nobel laureates.
I could go on and on and back and forth, but it is late and the plane will be early. I'll try to fill you in on more and on housing and such later. For now, I just think about how parents are supposed to know what the right thing to do is whenever there is a hard decision. I wish I knew and I wish I knew what to say to help John decide the right thing to do.
