Oh the Journey of Leukemia and Me. Unfortunately, a new chapter began this week.
Oh the Journey of Leukemia and Me. Unfortunately, a new chapter began this week.
I found out today that I have some leukemic cells in my marrow, How likely was this to happen? Around 40% actually, so I'm not terribly surprised, but it does suck. Pre-transplant, two doctors told me the allogenic transplant success rate into continued remission was 62% for ALL- leukemia. So my odds were probably around there, and I was hoping I was one of those in the 60%, and I did everything I could to get in there (like the full total-body radiation with the extra cranial-spinal radiation). But alas, I wasn't able to draw the right cards again, so I'm back with leukemia floating around my blood stream. I remember reading a line in the transplant booklet that stuck with me: something like "transplant gives patients the hope of a cure."
Two weeks ago, Dr .Shustov suggested a flow cytometry test on my peripheral blood just as a non-invasive way to check for presence of abnormal cells. It came back with a handful (<0.01%) of "suspicious cells," or abnormal b cells that plotted exactly like my previous leukemic cells. So I got the call from the PA, the one I have been dreading since we last drew blood, and I was to come in the next day for more testing and meet with Dr. Shustov. I was at work, told my co-worker, had an early day, and then told Briana, processed some at home, and got over the shock. The next day we met with Dr. Shustov first, and he said "I'm worried, but I don't know how much until we get the Bone Marrow back." So we did a Bone Marrow to test deeper, since these tests are ten times more sensitive than peripheral blood. We also tapped the Ommaya reservoir to check for presence in the CNS. I left the meeting feeling hopeful, if the bone marrow showed trace as well, then treatment would be easy. Dr. S said that it's not unusual for a few abnormal cells to pop up, and if it's only a few then you can send the new immune system on them. One of the reasons for the transplant is that my new immune system might be able to recognize these abnormal cells and destroy them. This is called graft vs disease or GVD. In my case its also called graft vs leukemia or GVL. If the recurrence is small enough, sometimes you call up the the donor to send over just immune cells and you put those into your blood stream to get a boost of T-cells that can attack the leukemia. I was hopeful about this, and thought maybe this whole fiasco was because I'd been on immunospressants so long, and haven't had the chance to unleash my immune system to full leukemia-butt-kicking potential. If the amount is small, this could all clear up once my own immune system gets a chance to seek-and-destroy in the next couple weeks.
Today I had the follow-up appt to talk about the results from the bone marrow and the Ommaya tap. Thankfully the Ommaya tap was clean. So no detectable presence in the CNS. But the bone marrow showed 10% abnormal leukemic cells, so way up from <0.01%. For perspective, new cases of Leukemia are usually around 80-90%. So 10%, isn't nothing, but you certainly, can't hide from it, but it's not like a "we-have-to-treat-you-
Going forward there is some good news that there are some treatments available. The main goal is to get the CAR T-cells. But that takes some time: gotta get accepted through insurance, then get my t-cells extracted, suped up, and then re-inserted. Too much time for a 10% marrow situation. Plus they don't like to collect T-cells until you've been off immuno suppressants for 3 weeks, and I just stopped a week ago.
So what to do in the meantime? Well for me, a little chemo could knock out the leukemia but it would also knock out my T-cells production. So that's off the table. But there's another immunotherapy, Blincyto, that just came out from Amgen (up the street from the Hutch) that works like CAR-T cell therapy in that it helps T-cells attack at the CD19 receptor on the leukemia. It has been effective with people with trace leukemia, but it might still do something with my load and buy us some time. This week, Dr. S is making calls, talking to the experts of these medications, and making sure that no treatments will interfere with eachother. I'll likely start blincyto early next week. Which because of possible cytokine toxicity, patients gotta be watched in a hospital during the potentially 5 day long infusion.
Since the immunotherapies aren't as intense as the chemo, I shouldn't have as many side-affects, so there's a decent chance that this news won't disrupt my summer too much. But like everything in cancer world, we'll just have to wait and see.
I found out today that I have some leukemic cells in my marrow, How likely was this to happen? Around 40% actually, so I'm not terribly surprised, but it does suck. Pre-transplant, two doctors told me the allogenic transplant success rate into continued remission was 62% for ALL- leukemia. So my odds were probably around there, and I was hoping I was one of those in the 60%, and I did everything I could to get in there (like the full total-body radiation with the extra cranial-spinal radiation). But alas, I wasn't able to draw the right cards again, so I'm back with leukemia floating around my blood stream. I remember reading a line in the transplant booklet that stuck with me: something like "transplant gives patients the hope of a cure."
Two weeks ago, Dr .Shustov suggested a flow cytometry test on my peripheral blood just as a non-invasive way to check for presence of abnormal cells. It came back with a handful (<0.01%) of "suspicious cells," or abnormal b cells that plotted exactly like my previous leukemic cells. So I got the call from the PA, the one I have been dreading since we last drew blood, and I was to come in the next day for more testing and meet with Dr. Shustov. I was at work, told my co-worker, had an early day, and then told Briana, processed some at home, and got over the shock. The next day we met with Dr. Shustov first, and he said "I'm worried, but I don't know how much until we get the Bone Marrow back." So we did a Bone Marrow to test deeper, since these tests are ten times more sensitive than peripheral blood. We also tapped the Ommaya reservoir to check for presence in the CNS. I left the meeting feeling hopeful, if the bone marrow showed trace as well, then treatment would be easy. Dr. S said that it's not unusual for a few abnormal cells to pop up, and if it's only a few then you can send the new immune system on them. One of the reasons for the transplant is that my new immune system might be able to recognize these abnormal cells and destroy them. This is called graft vs disease or GVD. In my case its also called graft vs leukemia or GVL. If the recurrence is small enough, sometimes you call up the the donor to send over just immune cells and you put those into your blood stream to get a boost of T-cells that can attack the leukemia. I was hopeful about this, and thought maybe this whole fiasco was because I'd been on immunospressants so long, and haven't had the chance to unleash my immune system to full leukemia-butt-kicking potential. If the amount is small, this could all clear up once my own immune system gets a chance to seek-and-destroy in the next couple weeks.
Today I had the follow-up appt to talk about the results from the bone marrow and the Ommaya tap. Thankfully the Ommaya tap was clean. So no detectable presence in the CNS. But the bone marrow showed 10% abnormal leukemic cells, so way up from <0.01%. For perspective, new cases of Leukemia are usually around 80-90%. So 10%, isn't nothing, but you certainly, can't hide from it, but it's not like a "we-have-to-treat-you-
Going forward there is some good news that there are some treatments available. The main goal is to get the CAR T-cells. But that takes some time: gotta get accepted through insurance, then get my t-cells extracted, suped up, and then re-inserted. Too much time for a 10% marrow situation. Plus they don't like to collect T-cells until you've been off immuno suppressants for 3 weeks, and I just stopped a week ago.
So what to do in the meantime? Well for me, a little chemo could knock out the leukemia but it would also knock out my T-cells production. So that's off the table. But there's another immunotherapy, Blincyto, that just came out from Amgen (up the street from the Hutch) that works like CAR-T cell therapy in that it helps T-cells attack at the CD19 receptor on the leukemia. It has been effective with people with trace leukemia, but it might still do something with my load and buy us some time. This week, Dr. S is making calls, talking to the experts of these medications, and making sure that no treatments will interfere with eachother. I'll likely start blincyto early next week. Which because of possible cytokine toxicity, patients gotta be watched in a hospital during the potentially 5 day long infusion.
Since the immunotherapies aren't as intense as the chemo, I shouldn't have as many side-affects, so there's a decent chance that this news won't disrupt my summer too much. But like everything in cancer world, we'll just have to wait and see.
Hi Derek, thanks for the update and of course we are sending you good wishes. We are saddened that you and Briana must continue to fight the leukemia battle.
ReplyDeletelove Jeff and Joy
Dang.
ReplyDeleteAuntie Grace here. My mental picture is you getting ready for going onto the field for a tough soccer game--hitching up your shorts, running in place, doing a few high jumps and generally psyching yourself up for the battle ahead. I'm praying for successful treatment, of course, but also for an unending well of strength for you to draw on--physical, mental, spiritual, emotional. Know that we want to help you conquer this.
ReplyDeleteGrace
Man, bummer to hear. Sounds like it'll be a bit of a balancing act with those treatments for the next little while but hopefully more ways to hit it hard soon. We will be keeping good thoughts coming from here.
ReplyDeleteIn the meantime happy 4th. Hope you guys are using that great back yard setup to the max today.
George
We're just hoping that the medical innovation keeps outpacing the disease, Derek. You've got a great attitude and motivation, so you're holding up your end of the deal. Best to you, Bree and Alpen.
ReplyDelete