Published on February 6, 2019
Patient Power host Beth Probert speaks with acute myeloid leukemia (AML) expert Dr. Naval Daver from MD Anderson Cancer Center, Leah Szumita from The Leukemia & Lymphoma Society (LLS), and AML patient Steve Buechler. They discuss new therapies targeted toward specific genetic mutations because the standard of care may not provide the most benefit. What’s new in AML research? Steve shares insight into facing AML as a patient, giving a view of his personal experience. Dr. Daver updates us on what patients can look forward to in 2019 for AML patients. Leah provides actionable information for patients finding clinical trials that might fit their condition.
This is a Patient Empowerment Network program produced by Patient Power in partnership with The Leukemia & Lymphoma Society. We thank Astellas, Celgene, Daiichi Sankyo, Jazz Pharmaceuticals, and Novartis for their support.
Transcript | Emerging Research and Promising AML Treatment Approaches
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Hello, and welcome to today’s webinar. I’m Beth Probert. I am an MPN patient, was diagnosed a few years ago with polycythemia vera. Today’s webinar is where are we headed with the treatment of acute myeloid leukemia. What can patients look forward to for the coming year?
This is a Patient Empowerment Network program. And I’d like to thank our sponsors. As always, our sponsors have no editorial control over the content. Today, we’re going to talk about topics like recent breakthroughs in AML treatment and research announced at the 2018 American Society of Hematology ASH Annual Meeting. We’ll look at emerging clinical trials and how to access them, individualized approaches to treat distinct AML subtypes, and how will these advances translate for patients. You’ll also hear from AML patient Steve, as he shares his first-hand experience facing AML and how he’s doing now.
We will also answer viewer questions. And if you have a question, please keep in mind, we can’t get real specific with these questions, so try to keep them general, really geared more towards information and questions.
And we’d like you to send your questions throughout the program to questions@PatientPower.info. I’m going to repeat that one more time. Questions@patientpower.info. We will try to answer all questions that come through. And if we can’t get to all of them, we will certainly address them through future webinars. Now, I’d love to introduce you to today’s guest. Our first guest is Dr. Naval Daver, associate professor, Department of Leukemia at the University of Texas MD Anderson Cancer Center. Welcome, Dr. Daver. I’m so glad you could join us today.
Hello. Thank you for having me. Glad to join.
And our next guess is Leah Szumita. And Leah provides clinical trial support at The Leukemia & Lymphoma Society. So, Leah, thank you. I’m glad you can be here today.
Thank you. I’m so happy to be here.
And our next guess is our patient panelist, Steve Buechler, and he is an AML patient who has had a remarkable journey. Steve, welcome from Minnesota.
Thank you. I’m happy to be here.
Great. Well, Steve, we’d like to get started with you. I’d like for you to tell our viewers a little bit about your life with AML. And if you can include how did you get diagnosed, what was that like getting diagnosed, and how did you react, who is your support team, and just what you’ve been though. So, I’ll turn it over to you now.
Well, at age 64, I was living what I thought was a normal, healthy life. I had no symptoms. My primary care physician had been monitoring my white blood cell count for a couple of years because it was borderline low but not too alarming. And then, in the spring of 2016, it began to drop more precipitously.
So, he recommended I see a hematologist, and I went to do that. And the hematologist said I should probably have a bone marrow biopsy. And so, I agreed to do that sort of to humor them because I didn’t feel sick. I didn’t have any symptoms. I didn’t have any idea anything was wrong. It was a memorable week. The biopsy was on a Monday. On Tuesday, I swam my normal 50 laps. I did some shopping. I ate dinner out. Wednesday morning, I played in a weekly poker game with some retired guys. So, life was normal, until that phone call that came Wednesday afternoon informing me I had acute myeloid leukemia, and I had to get to a hospital right away.
So, the next day, I checked into a hospital. The day after that, Friday, I started chemotherapy. So, in 48 hours, I went from feeling perfectly healthy to 24/7 chemotherapy drip. And they started me on this standard treatment that’s been use, I think, for a very long time called 7 + 3 cytarabine (Cytosar-U) and daunorubicin (Cerubidine) to try to get the cancer into remission. And so, I spent a week on that medication.
And then, I waited for the inevitable drop in my white blood cell count and my immune system. I was going to be very vulnerable to various kinds of infections. And as predicted, I came down with colitis and an E coli infection, body rash, and a bunch of other stuff that they couldn’t even identify. But the infectious disease doctors stepped in and dealt with those issues one at a time. So, I ended up spending five-and-a-half weeks in the hospital for my counts to recover. But the good news was, one month after starting chemo, they did a bone marrow biopsy that found there was no residual leukemia. So, the first goal had been reached, at that point. I was in remission.
Adding to the story, of course, the first night I spent in the hospital, my wife was with me and left late in the evening to go home. And as she arrived home, she had a stabbing pain in her right leg. The next morning, she got up and could hardly get out of bed, called 9-1-1. They brought her to my hospital in an ambulance through the ER.
And it turned out she had a fractured femur. So, I was on one floor of the hospital in the chemo ward, and she was on another floor of the hospital awaiting subsequent surgery to repair her leg. And then, she went off to a transitional care unit for rehab. So, when I realized our house was going to be unoccupied for about a month, I started to write to our neighbors on email. And I found it was a really useful way to communicate. So, I ended up, over the many months that followed, adding maybe 60 people to that email list and sending over 60 emails out, over the course of a year-and-a-half to keep people informed of what was going on.
I, subsequently realized, as I was writing for other people that I was really using that writing to make sense of my own experience. I struggled to figure out what was going on and how I could capture it and how I could explain to people. And it was useful to get their responses back, but it was useful for me. It was very therapeutic for me just to have that writing experience to make sense out of what was going on.
After five-and-a-half weeks, I got permission to leave. I went home for a while. But I was awaiting the genetic testing of my cancer to figure out what the next round of treatment would be. Because I think people know, with AML, there needs to be a second arm of the treatment. It can come back very fast and very ferociously. I was told that the genetic testing of my cancer would put me in either a low-risk or a high-risk category for recurrence. And that would point towards either chemotherapy, if it was low risk, and stem cell transplant, if it was high risk.
When the results finally came in, they said, “Well, you’re kind of in an intermediate category.” So, the way forward was not as clear as I thought it might be. So, I talked to my initial oncologist. I did my own research. I, subsequently, went and talked to a transplant oncologist at the University of Minnesota Medical Center who sort of nudged me towards the transplant option. I went to the Mayo Clinic and got a second opinion. And all of the indications really were that I would be a good candidate for transplant. I had no co-morbidity. I had no other health problems.
And everybody thought I should probably be able to withstand the conditioning fairly well. So, eventually, I came around to that decision to have a stem cell transplant. I had a brother who was a half match donor. But the folks at the BMT unit said we also have some good umbilical cord blood matches for you. And so, I was, again, faced with the decision about which way to go. But it turned out they had a study. Don’t they always have a study? I was randomly assigned to the cord blood donor option. So, my brother was off the hook.
And I ended up having a double cord blood stem cell transplant in October of 2016, about four or five months after I was initially diagnosed. That procedure went very smoothly. And within three weeks, a biopsy revealed that one of my cord donors was 99 percent engrafted, which is pretty early for a cord blood procedure. So, that was good news. I was able to go home, at that point, and begin a pretty long, extensive, and sometimes arduous process of recovery.
The first 100 days, they offered me to come back to clinic daily for the first month or so to get blood tests, to get platelets, to get red blood cell transfusions, whatever it is that you need to keep you healthy. It’s a pretty vulnerable time. One of the oncologists, at the transplant unit, described this whole procedure as, first, we bring you to the brink of death by killing off diseased immune system. And then, we try to bring you back again. Well, it worked, in my case, I’m happy to report. So, by early 2017, I was beginning to taper off my anti-rejection medication. That ended in April of that year.
And then, it was just a process of gradually getting more strength, getting better. And, in my case, very fortunately, I avoided any trace of graft-versus-host disease. So, that allowed me to have a pretty healthy recovery. One year after my transplant, of course, I had to go in and get my baby shots, my vaccinations and needles because my previous immune system had been obliterated. And they only gave me the dead vaccines, at that point, because they reasoned I couldn’t handle the live ones.
So, that happened at year two. And that was recently completed about two months ago. I got the rest of my vaccines. The other good part of the story is, although there was a 60 to 70 percent chance of graft-versus-disease, I never had any trace of that. I’ve since become very active in talking with other patients as a volunteer, doing some writing, becoming involved in the cancer community. And I’ve come to appreciate really how fortunate my story was. I think the three big indicators were I got into remission on the first try. I’ve talked to a lot of patients who haven’t been able to do that.
My transplant engrafted within three weeks, which was a very solid, early result. And a lot of patients don’t have that kind of success. And I had no graft-versus-host disease. So, that’s about as good of a story as you can have with AML, as I understand it. So, obviously, I’m very grateful to have done that. And something like that gives me a lot of motivation to try and give something back. So, I’ve been participating in various ways in the cancer community.
Believe it or not, that’s the short version.
Steve, you have a remarkable story. I just heard—we talked earlier, and just to keep hearing your story again is really just so noteworthy. And the three points you made, just having the early remission the first time with chemo is amazing. And early engraftment just within three weeks and no graft-versus-host disease. And your enthusiasm and wanting to give back and just with your writing. And we’ll talk a little bit later. I know that you have a book that’s coming out. So, your story is, for someone like me, amazing. But, Dr. Daver, I’d like to turn to you, for a few moments, and tell me, is Steve’s story typical?
And what kind of feedback do you have on his journey?
So, Steve’s story is a very good outcome story. It’s not necessarily typical, as Steve mentioned. About 70 to 80 percent of our patients will go into remission with the first induction. So, it’s a high number, but it’s not 100 percent. And if you don’t go into remission with the first induction that is actually one of the very high risk or adverse features. It’s called primary refractory AML. And those patients usually do have a much harder time. The second thing is about 60 percent of patients will fall in what we call intermediate groups. So, we do do molecular and cytogenetics. And if we find that we have favorable molecular cytogenetic changes, then, those are considered to be good.