Oct 18. Achieved remission!... but now what?
Yesterday I found out that my bone marrow came back with 0% leukemia. We achieved the goal of CAR-t CD19 therapy: a complete remission (CR)! It was great news. Briana and I went out for dinner at La Madusa, the nicest restaurant in Columbia City and co-celebrated the news with my belated birthday dinner. I felt good. I felt relieved. I felt hopeful.
But right now, I feel less so and it’s annoying and frustrating, as the world of cancer usually is. In previous trials, 80% of patients achieve CR through this therapy, and it felt good to be with the 80%. However, CR doesn’t always stick around, maybe 40-50% (I gotta learn this number) stay in CR for 2 years. And what I’m facing now is: how long will my remission last? Today, I was reminded of this by Dr. Maloney, who came into my room and we had an initial discussion about my options. We’re gonna talk more about it on my exit conference, but he wanted to get me thinking about it. Basically, we can do nothing and hope the CAR-t cells stick around and that I achieve long-term remission or we go for a 2nd transplant which might increase the odds of long-term remission slightly. Waiting could work: the first girl treated with CAR-t therapy, four years ago, is still in remission, so it’s possible my car-t cells got and will continue to get the cancer.
Previous studies have shown that following up CAR-t therapy with a hematopoietic stem cell transplant (HSCT) (what I had before) gives the best odds of long term remission. However, following up with a 2nd HSCT is unknown, there just hasn’t been enough patients that have done it. But what is known is that a 2nd transplant is more dangerous (higher fatality rates), but they say this has gotten better in recent years. It’s also unknown if these new human virus CAR cells will last longer than the mouse virus CAR cells, and thus keep me in remission longer. If that’s the case, then it’s probably a better bet to see what these CAR cells will do and take that risk. But we don’t know because this is the first trial that has used the human virus. Another downside of the transplant that I learned today is the new immune system from the new donor will see the CAR-t cells as foreign and eventually track them down and destroy them. So I would essentially be shutting down any CAR-t activity. That thought was tough to stomach.
The weight of this decision is major and I have to make a decision soon, while I’m still in CR. SCCA won’t let you have a transplant if you are not in CR. I’ll probably stay in CR for at least 2 months, which would mean I need to decide in the next 2-3 weeks to get the ball rolling if I decide 2nd HSCT. Transplant comes with its pile of uncertainty of GvH, acute issues, career/life stasis, another 12 months of restrictions, plus another month in the hospital. I really don’t want to do it. But waiting around and seeing if the CAR-t cells is enough is a gamble too. But if a 2nd HSCT gives me my greatest chance of staying in CR, do I suck it up and take it? What if the data says only 10% better odds, is that worth it? Do I listen to the doctor’s opinions or do I make my own decisions based on the data they tell me? Dr. Turtle, a brilliant doc who is the other PI on this study thinks I should go for a 2nd transplant. Dr. Maloney so far hasn’t expressed an opinion.
Another relapse would be bad news for me. I wouldn’t have any other good options: I’ve almost met my lifetime chemo load, another CD19 attempt usually gives poor results, I can’t take any more radiation, and I’ve already had one failed HSCT. If I relapse, we could try some new CD22 medicine, but there is no guarantee that it would send me back into CR.
I need to talk to Dr. Shustov for some perspective, he knows me best. And maybe some other transplant doctors, learn more about the HSCT2 world. My plan for now is to gather some more info, get some more opinions from some more docs, and then decide. Wish me clear thinking, continuing remission, and good luck.
But right now, I feel less so and it’s annoying and frustrating, as the world of cancer usually is. In previous trials, 80% of patients achieve CR through this therapy, and it felt good to be with the 80%. However, CR doesn’t always stick around, maybe 40-50% (I gotta learn this number) stay in CR for 2 years. And what I’m facing now is: how long will my remission last? Today, I was reminded of this by Dr. Maloney, who came into my room and we had an initial discussion about my options. We’re gonna talk more about it on my exit conference, but he wanted to get me thinking about it. Basically, we can do nothing and hope the CAR-t cells stick around and that I achieve long-term remission or we go for a 2nd transplant which might increase the odds of long-term remission slightly. Waiting could work: the first girl treated with CAR-t therapy, four years ago, is still in remission, so it’s possible my car-t cells got and will continue to get the cancer.
Previous studies have shown that following up CAR-t therapy with a hematopoietic stem cell transplant (HSCT) (what I had before) gives the best odds of long term remission. However, following up with a 2nd HSCT is unknown, there just hasn’t been enough patients that have done it. But what is known is that a 2nd transplant is more dangerous (higher fatality rates), but they say this has gotten better in recent years. It’s also unknown if these new human virus CAR cells will last longer than the mouse virus CAR cells, and thus keep me in remission longer. If that’s the case, then it’s probably a better bet to see what these CAR cells will do and take that risk. But we don’t know because this is the first trial that has used the human virus. Another downside of the transplant that I learned today is the new immune system from the new donor will see the CAR-t cells as foreign and eventually track them down and destroy them. So I would essentially be shutting down any CAR-t activity. That thought was tough to stomach.
The weight of this decision is major and I have to make a decision soon, while I’m still in CR. SCCA won’t let you have a transplant if you are not in CR. I’ll probably stay in CR for at least 2 months, which would mean I need to decide in the next 2-3 weeks to get the ball rolling if I decide 2nd HSCT. Transplant comes with its pile of uncertainty of GvH, acute issues, career/life stasis, another 12 months of restrictions, plus another month in the hospital. I really don’t want to do it. But waiting around and seeing if the CAR-t cells is enough is a gamble too. But if a 2nd HSCT gives me my greatest chance of staying in CR, do I suck it up and take it? What if the data says only 10% better odds, is that worth it? Do I listen to the doctor’s opinions or do I make my own decisions based on the data they tell me? Dr. Turtle, a brilliant doc who is the other PI on this study thinks I should go for a 2nd transplant. Dr. Maloney so far hasn’t expressed an opinion.
Another relapse would be bad news for me. I wouldn’t have any other good options: I’ve almost met my lifetime chemo load, another CD19 attempt usually gives poor results, I can’t take any more radiation, and I’ve already had one failed HSCT. If I relapse, we could try some new CD22 medicine, but there is no guarantee that it would send me back into CR.
I need to talk to Dr. Shustov for some perspective, he knows me best. And maybe some other transplant doctors, learn more about the HSCT2 world. My plan for now is to gather some more info, get some more opinions from some more docs, and then decide. Wish me clear thinking, continuing remission, and good luck.
Wishing you all of that, and some more good meals with Bree! Glad to hear this news. Tough decision but your docs sound great. I hope they help you a lot with the decision. Hope to see you guys soon!
ReplyDeleteThank you for the update Derek. Difficult decision for sure. Sending you, Bree, and Alpen all the best. The Roberts
ReplyDeleteI'm glad you and Bree had a chance to celebrate! And I'm glad you have a good rapport with your medical team and believe they can give you the best possible advice, when statistics alone are not that helpful. We think of the three of you often and hope all goes well. xoxo Auntie Vic et al.
ReplyDeleteOh man -- SO happy about the first paragraph (and your celebration! HBD!). But agonizing for you and Briana over the rest. What a terribly fraught and unknowable decision. Sending you all the clear thinking and luck there is to give.
ReplyDeleteREMISSION!!!!!! So relieved and grateful right now. My first draft 🤓 of this comment was mostly focused on what's next but wait. a. second. REMISSION!!!!?!! that's freaking fantastic.
ReplyDelete.
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🚗-T treatment was a seriously major choice (having to wait until your marrow 80% affected?! barf. brave. terrifying.) and it worked and I hope that it gives you and your team big confidence and positivity as you get ready to make this next choice.
Happy belated! Yay good news!! Wishing you clear thinking, good luck, fun times with the fam, and CR through it all!
ReplyDeleteCan't tell if comment from yesterday went through, so will try again. First off, Thank you Derek for writing so clearly and explaining everything so clearly. We are ecstatic to hear of your CR!!! Hope that the clarity you show in your writing will help you through this next very tough decision. Of course we wish luck and love to you, Bree and Alpen through this next phase and throughout.
ReplyDeletePenny & Philip
Hi Derek. Happy belated birthday and we are so pleased to learn you are in remission!!! I am always impressed with your ease of writing about something so complicated and the humor and humanness you inject into your messages. You do have some big decisions ahead of you and we wish you the best as you navigate through and set your path. We send you, Briana and Aplen lots of love.
ReplyDeleteMarit & Joe