Day 25
After 25 days in the hospital, John should be able to come home today. His blood counts are improving (you take the neurophils and multiply by the number of dips and bands or something). He is quietly excited about leaving, but he also seems a little pensive at the same time. It’s hard to say all he has to be thinking, but he won’t come out the same person – bald, six foot three and barely 160 pounds. On the inside, though he has to be adjusting even more. Debbie and I will have to resist hovering and let him be free to live his own life for the few days he will be out.
Normally, a patient in induction chemotherapy takes about 28 days from the start of treatment to leave the hospital. The key factor is how quickly (and in some cases whether) the patient’s blood counts bounce back. John is ahead of schedule at this point, but as soon as his numbers rise enough, he goes back in for six days of the first consolidation chemotherapy. If he has no infections or complications, he will be able to recover at home, with clinic visits every other day.
We plan to meet with Dr. Khoury on Friday to talk about the plan for what follows. He has already said that a lot will depend on the results of his next bone marrow test, which should be taken just before he starts his first consolidation. Chemotherapy kills fast growing cells, sort of like “weed and feed” fertilizer kills crabgrass, I suppose. Leukemia (and hair) cells die off, but with AML, they tend to come back, particularly if the patient has one of two characteristics. They have identified, so far, several types of DNA mutations in bone marrow stem cells that can’t be changed my chemotherapy. Some of them are markers for recurrence and some are actually good signs. John shows none of those in his “cytogenic” tests. The second characteristic for AML recurrence is myleodysplasia, in which the mylogenous white blood cells that aren’t cancerous still appear dysfunctional. It shows that something wrong is still going on with white blood cell formation that isn’t right. Basically, dysplased cells are pre-cancerous.
John’s first bone marrow test showed this problem. The first doctor on duty described his dysplasia as “multi-lineal.” The second was vague and the third used the more general term of “myleodysplasia.” John’s second bone marrow test, while showing some remaining leukemia cells, couldn’t test for dysplasia because you have to wait for the dust to settle in the tissue. That is why the next test will be important. If whatever caused the dysplasia was affected, his outlook will be better. If not, a bone marrow transplant will be necessary.
Chemo does not fix the underlying cause of dysplasia. They don’t know what causes it, but sometimes it can go simply away. I gather that reading for dysplased cells is like reading tea leaves – a guess, but in which experience matters. From that, you take the success level achieved in eliminating leukemic cells, the presence of any of the known genetic mutations and figure the likelihood the cancer will return. You then have to balance that against the risks that come with a bone marrow transplant. Even with a perfect match from within the family, failures occur. That is why the test for Courtney was important (and also why I was upset with the hospital over the way they handled its results). Preliminarily, they have identified a couple of likely “good” matches from the national bone marrow database, but each will need to be retested to check the 200 or so characteristics they currently have found in matching. Then the health of the donor and other nuances have to be considered.
Unrelated donors are rarely perfect matches, so success rates for transplants go down. John won’t have a perfect match. The process of weighing risks will be an important one for him. That’s also why getting a second or third opinion from the best clinics matters. Different clinics have significant differences in results. It’s a lot more important than whether you would “buy a used car from this person”, but the comparison fits.
John will probably be back in the hospital for Christmas, but we won’t know the exact days until later. I should be able to begin spending more time at work after today, which will be nice, because there are actually answers to the problems you work on there. Also, you have to be grateful to work for a company with the heart to be as helpful as Cox has been.
Normally, a patient in induction chemotherapy takes about 28 days from the start of treatment to leave the hospital. The key factor is how quickly (and in some cases whether) the patient’s blood counts bounce back. John is ahead of schedule at this point, but as soon as his numbers rise enough, he goes back in for six days of the first consolidation chemotherapy. If he has no infections or complications, he will be able to recover at home, with clinic visits every other day.
We plan to meet with Dr. Khoury on Friday to talk about the plan for what follows. He has already said that a lot will depend on the results of his next bone marrow test, which should be taken just before he starts his first consolidation. Chemotherapy kills fast growing cells, sort of like “weed and feed” fertilizer kills crabgrass, I suppose. Leukemia (and hair) cells die off, but with AML, they tend to come back, particularly if the patient has one of two characteristics. They have identified, so far, several types of DNA mutations in bone marrow stem cells that can’t be changed my chemotherapy. Some of them are markers for recurrence and some are actually good signs. John shows none of those in his “cytogenic” tests. The second characteristic for AML recurrence is myleodysplasia, in which the mylogenous white blood cells that aren’t cancerous still appear dysfunctional. It shows that something wrong is still going on with white blood cell formation that isn’t right. Basically, dysplased cells are pre-cancerous.
John’s first bone marrow test showed this problem. The first doctor on duty described his dysplasia as “multi-lineal.” The second was vague and the third used the more general term of “myleodysplasia.” John’s second bone marrow test, while showing some remaining leukemia cells, couldn’t test for dysplasia because you have to wait for the dust to settle in the tissue. That is why the next test will be important. If whatever caused the dysplasia was affected, his outlook will be better. If not, a bone marrow transplant will be necessary.
Chemo does not fix the underlying cause of dysplasia. They don’t know what causes it, but sometimes it can go simply away. I gather that reading for dysplased cells is like reading tea leaves – a guess, but in which experience matters. From that, you take the success level achieved in eliminating leukemic cells, the presence of any of the known genetic mutations and figure the likelihood the cancer will return. You then have to balance that against the risks that come with a bone marrow transplant. Even with a perfect match from within the family, failures occur. That is why the test for Courtney was important (and also why I was upset with the hospital over the way they handled its results). Preliminarily, they have identified a couple of likely “good” matches from the national bone marrow database, but each will need to be retested to check the 200 or so characteristics they currently have found in matching. Then the health of the donor and other nuances have to be considered.
Unrelated donors are rarely perfect matches, so success rates for transplants go down. John won’t have a perfect match. The process of weighing risks will be an important one for him. That’s also why getting a second or third opinion from the best clinics matters. Different clinics have significant differences in results. It’s a lot more important than whether you would “buy a used car from this person”, but the comparison fits.
John will probably be back in the hospital for Christmas, but we won’t know the exact days until later. I should be able to begin spending more time at work after today, which will be nice, because there are actually answers to the problems you work on there. Also, you have to be grateful to work for a company with the heart to be as helpful as Cox has been.
