Day 91
Yesterday, I went with John for his regular blood test, and expected blood transfusion. We also expected a visit with the doctor to talk about progress toward a transplant. While we were waiting for the day's blood levels results, Dr. Khoury stopped by to talk.
He said that John's immune system continues to recover poorly and they theorize that it is because he has lapsed back into a chronic preleukemia state, not chronic myleomia because they aren't finding cancer cells, but more like an MDS patient. I think they draw lines in a spectrum of this disease from one end to the other and give names to the ranges based on what they see.
He said he thought the best thing to do now is to proceed directly to a transplant as soon as possible and without any more intermediate consolidation treatments. There are three "perfect" donors to choose from and all are willing. We could have John in transplant in 4 to 6 weeks.
This seemed like good news in an odd sort of way. We talked in more detail with Mary, the NP, who said that a relapse in the meantime was much less likely than an infection, particularly a viral or fungal one that could cause pneumonia. That's why moving forward quickly is critical.
I asked about the risks in skipping consolidation. She said they really don't know what is the best program, only that some work better than others. This program makes sense and has the benefit of avoiding the toxic effects of extra chemo. Given John's unusual reactions to chemo so far, that doctors mutter about and take pictures of, I tend to agree.
They want us to get our consultation in Seattle as soon as possible, which is planned for next week, and be prepared to make a decision on where to go forward as soon as we return. It's John's decision to make ultimately. Right now he wants to see Seattle, before he makes up his mind, which seems a ballanced attitude.
I asked Mary about statistics. She winced and said that, for someone like John, his odds were about 60%. It really is about 50/50 for someone in his age group with AML. They don't factor in the fact of his MDS like status, but MDS patients have similar outcomes from transplants.
Mary didn't say two things. Those survivial rates are for one year only. Time brings them somewhat lower, but at 3 years you can start to think about living in the world again and at 5 years your odds of getting cancer are statistically the same as ours, which they define as a cure.
I asked Mary about Emory's statistics and she said that was a discussion to have with Dr. Khoury. That's an appropriate answer, but the fourth time I've been put off when asking.
The National Bone Marrow Donor Program obtains detailed statistics from its participating centers. They track each center's survivial rates for transplants to treat each type of blood cancer and they factor in age and factors that affect risk. Since 1992 they report that Emory has done172 bone marrow transplants for blood cancers, 64 of which were for AML. Within John's age group, they appear to be 0 for 2 at surviving a year. Not so good, but the reason I've kept asking is to get behind the numbers. So far not so good on that. Overall, when you factor in risk, Emory has performed at a roughly 30% level, when it should have been about 40%.
I do know that some of Emory's transplant team moved to Northside in the 1990s and that Emory has gone through a couple of rounds of rebuilding its staff sice then. Dr. Khoury, has been there only about 4 months. Dr. Chi about the same. The others involved in transplants, we've not met at all.
Seattle has performed ove 1500 transplants, 347 of which were for AML. Their results overall and in John's age group were above 50%, well above the predicted results. Thus the reason for our trip next week.
Mary cautioned that getting John into a transplant quickly should be a top priority and we should check immediate availability out there. I also think that we should ask Seattle's opinion on the idea of moving straight to transplant now. I like it, but it might increase the risk of relapse.
Overrall, they've done these transplants 15,000 times and what they know is less than what they don't know. You can call it an "art", but poisoning a patient to fight a disease is not much more advanced than blood letting (whicht they still do, by the way). The transplant process itself remains close to trial and error. I think that's why experience is important.
While we were with Mary, she persuaded John to have a bone marrow biopsy test on the spot to get a status on what was going on in his bones. That was the 5th test so far. A nurse chided John for not being able to recite his various blood levels and where they have been at each visit. She said he would be doing this for the rest of his life and since it was his life, he should take charge of it. That was one of those remarks you get that remind you that all this is permanent - if you are lucky.
Comments liike that still leave one drained. Debbie has saidthat when she is away while travelling she is preoccupied with the need to be here. I feel the same way. People say I shold take a break, but unless it's doing something for John or nearby, it's of no use. I can sit here and type while I can't sleep, but there is a lot of lost sleep time to fill.
John did have several friends over for dinner, gifts an games last night. He has very good friends who treat him as normal, despite how he looks and the fact that he is tied to his room. They gave him a few gifts. His new computer is stil a week or so away from arriving. I'm tired now. I'll fill you in more later.
He said that John's immune system continues to recover poorly and they theorize that it is because he has lapsed back into a chronic preleukemia state, not chronic myleomia because they aren't finding cancer cells, but more like an MDS patient. I think they draw lines in a spectrum of this disease from one end to the other and give names to the ranges based on what they see.
He said he thought the best thing to do now is to proceed directly to a transplant as soon as possible and without any more intermediate consolidation treatments. There are three "perfect" donors to choose from and all are willing. We could have John in transplant in 4 to 6 weeks.
This seemed like good news in an odd sort of way. We talked in more detail with Mary, the NP, who said that a relapse in the meantime was much less likely than an infection, particularly a viral or fungal one that could cause pneumonia. That's why moving forward quickly is critical.
I asked about the risks in skipping consolidation. She said they really don't know what is the best program, only that some work better than others. This program makes sense and has the benefit of avoiding the toxic effects of extra chemo. Given John's unusual reactions to chemo so far, that doctors mutter about and take pictures of, I tend to agree.
They want us to get our consultation in Seattle as soon as possible, which is planned for next week, and be prepared to make a decision on where to go forward as soon as we return. It's John's decision to make ultimately. Right now he wants to see Seattle, before he makes up his mind, which seems a ballanced attitude.
I asked Mary about statistics. She winced and said that, for someone like John, his odds were about 60%. It really is about 50/50 for someone in his age group with AML. They don't factor in the fact of his MDS like status, but MDS patients have similar outcomes from transplants.
Mary didn't say two things. Those survivial rates are for one year only. Time brings them somewhat lower, but at 3 years you can start to think about living in the world again and at 5 years your odds of getting cancer are statistically the same as ours, which they define as a cure.
I asked Mary about Emory's statistics and she said that was a discussion to have with Dr. Khoury. That's an appropriate answer, but the fourth time I've been put off when asking.
The National Bone Marrow Donor Program obtains detailed statistics from its participating centers. They track each center's survivial rates for transplants to treat each type of blood cancer and they factor in age and factors that affect risk. Since 1992 they report that Emory has done172 bone marrow transplants for blood cancers, 64 of which were for AML. Within John's age group, they appear to be 0 for 2 at surviving a year. Not so good, but the reason I've kept asking is to get behind the numbers. So far not so good on that. Overall, when you factor in risk, Emory has performed at a roughly 30% level, when it should have been about 40%.
I do know that some of Emory's transplant team moved to Northside in the 1990s and that Emory has gone through a couple of rounds of rebuilding its staff sice then. Dr. Khoury, has been there only about 4 months. Dr. Chi about the same. The others involved in transplants, we've not met at all.
Seattle has performed ove 1500 transplants, 347 of which were for AML. Their results overall and in John's age group were above 50%, well above the predicted results. Thus the reason for our trip next week.
Mary cautioned that getting John into a transplant quickly should be a top priority and we should check immediate availability out there. I also think that we should ask Seattle's opinion on the idea of moving straight to transplant now. I like it, but it might increase the risk of relapse.
Overrall, they've done these transplants 15,000 times and what they know is less than what they don't know. You can call it an "art", but poisoning a patient to fight a disease is not much more advanced than blood letting (whicht they still do, by the way). The transplant process itself remains close to trial and error. I think that's why experience is important.
While we were with Mary, she persuaded John to have a bone marrow biopsy test on the spot to get a status on what was going on in his bones. That was the 5th test so far. A nurse chided John for not being able to recite his various blood levels and where they have been at each visit. She said he would be doing this for the rest of his life and since it was his life, he should take charge of it. That was one of those remarks you get that remind you that all this is permanent - if you are lucky.
Comments liike that still leave one drained. Debbie has saidthat when she is away while travelling she is preoccupied with the need to be here. I feel the same way. People say I shold take a break, but unless it's doing something for John or nearby, it's of no use. I can sit here and type while I can't sleep, but there is a lot of lost sleep time to fill.
John did have several friends over for dinner, gifts an games last night. He has very good friends who treat him as normal, despite how he looks and the fact that he is tied to his room. They gave him a few gifts. His new computer is stil a week or so away from arriving. I'm tired now. I'll fill you in more later.
