B-cell acute lymphoblastic leukemia (ALL): Peter's Story (Video)

Summary: Peter Feinberg came through transplant and graft-versus-host disease, and shares what it took to regain his physically active life after treatment.

Peter Feinberg
B-cell acute lymphoblastic leukemia (ALL)
Transplant: 2021 

Transcript:

An Active Life Disrupted: “I knew something was out of whack.”

(00:19) Peter Feinberg: I'm Peter Feinberg. I was diagnosed with B-cell acute lymphoblastic leukemia (ALL) in December of 2020. I was a full-time practicing corporate law attorney, living with my wife in San Francisco, California. I led an active life which, in addition to my law practice, included outdoor activities like swimming and hiking, time spent with friends, and volunteering.

(00:44): About a year and a half before my diagnosis, I'd had a very bad body surfing injury in which I broke my neck, broke all my ribs on my left side, punctured a lung, and dislocated a shoulder. As part of that, I had some blood panels done that showed that I had very low red blood cells and very low platelets. My doctor at that time believed that it was solely the result of the accident and my body being thrown off.

Searching for Answers: “My thought…was that I probably had some sort of moderate anemia.”

(01:13): I ran a couple of times a week, seven miles a shot. I was running seven-minute miles, and I started noticing that my times got significantly worse. I went from under seven to over nine, and I felt far more tired at the end of it. I knew something was out of whack. I said to my primary care physician, "I'm not going to leave your office until we get to the bottom of this." My thought was that I probably had some sort of moderate anemia, which was going to be treated as an outpatient and getting a shot of B12, or something similar, a few times a year.

(01:49): There's a test called cytogenetics that they did, which showed that I had a 90% likelihood of having either leukemia or lymphoma. That led to something called a bone marrow biopsy, and the bone marrow biopsy showed that not only did I have leukemia, but that it was an acute lymphoblastic leukemia (ALL). It was B-cell Philadelphia chromosome negative. And a very worried hematologist/oncologist, whom I had never met, called me on the phone, and told me I needed to be in the hospital within 36 hours to start a chemotherapy treatment for ALL called CVAD.

CVAD: A Harsh Reality: “I think I went into it with a combination of adrenaline, arrogance, and obliviousness…”

(02:29): I think I went into it with a combination of adrenaline, arrogance, and obliviousness that kind of made me feel like it wasn't as serious as it really was. I knew that the disease had taken my mom and her mom. There hadn't been a lot of conversation about what they went through. I think that there was a lot of hardcore denial going on in my mind.

(02:51): The typical starting treatment for ALL patients is something called CVAD. It comes in two different rounds, and I physically sailed through the first round. I was told by my nurse, when I got out of the hospital and I put on my little puffer jacket and had my wheelie bag, that I looked more like someone arriving at SFO [San Francisco Airport] than somebody coming out of chemotherapy. All the people who had gone in the week before me were still there suffering when I got out, which I think was my good luck due to being in good shape going in.

(03:26): They give you a week off in between the first and the second round, and the second round was just absolutely terrible for me. What typically happens in CVAD is that after they complete those two rounds, they do another bone marrow biopsy to see if the leukemia is out of your system or if it's going down, or what the basic status of it is. Well, unfortunately, they found out that the cancer had gone from 15% to 50%, at which point they classified my leukemia as being severely refractory.

Finding Hope in a New Treatment: “…And that was the best day of my life.”

(04:05): There is a relatively new approved monoclonal antibody. The short name for it is Blincyto. That worked absolutely wonderfully for me. In the past, they would've just kept giving me the chemo that had not worked very well, and hope that somehow or another, my body would improve with it, but in all likelihood, I probably would have died.  

(04:28) This monoclonal antibody is a 28-day course, the first 11 days of which are in the hospital. The induction was very, very hard on me, probably because my body was fighting the antibodies so hard at that stage. But once I got used to it, after about the fifth day, it was very, very easy.

(04:53): Managing expectations was one of the most difficult aspects of all this. I said I went into this with a great degree of confidence. When I got that bone marrow biopsy result that showed that my cancer had not been reduced, but had significantly increased, that was the first time that I really thought, "I'm probably going to die of this," and that was a very overwhelming thing for me.

(05:12): My doctors really believed I was going to get a good outcome from the CVAD. Conversely, when I started on the Blincyto, while the doctors were optimistic, the thought was, "Well, he's probably going to need at least two cycles of Blincyto." And after one cycle, they did another bone marrow biopsy, and there was no detectable cancer in my body. That was the best day of my life.

Protecting Remission: The Stem Cell Transplant:  “I was really freaked out about the possibility that I might lose this remission.”

(05:37): I met several people through the course of going through this who had gotten into full remission, and then immediately, the cancer came back. In a couple of instances, they had not been able to get back into remission. So, I was really freaked out about the possibility that I might lose this remission and lose my way into a stem cell transplant, because the likelihood of the transplant working is far, far better if you go into it with no detectable cancer in your body.

(06:10): I went into Stanford Medical Center on March 31, 2021. They give you one day to get acclimated, and then they start intense chemotherapy: three days of busulfan and three days of Cytoxan,  then a day off, and then the stem cell transplant.

(06:26): While I had heard about the risks and side effects of transplant, what I had not realized was that almost none of those risks are related to the transplant itself. Instead, they relate to those six days of chemotherapy, the Cytoxan and the busulfan. When I was about to get the Cytoxan, I said, "Oh, no problem with the Cytoxan. I had no side effects whatsoever in CVAD." And they said, "Well, that's great, except the dose this time is going to be 6X what the dose was in CVAD."

(06:59): That was every bit as hard as you would imagine it would be. I felt very good going into the transplant. And I continued to feel very well for three or four days afterwards, so much so that I continued to ask my nurses if they were pranking me about these horrible things that I was going to start to feel. But I found out pretty quickly that they were, if anything, underestimating them.

Recovery, Gratitude, and GVHD: “I hit a home run there because I have one sibling, and she was a match.”

(07:25): The absolute gold standard for donors, in terms of preventing graft-versus-host disease (GVHD), is someone whose makeup is as close to yours as possible. If it is an identical twin, perfect. If it's a fraternal twin, really good. If not, a family member, like a parent, a child, or a sibling, is the next best thing. I hit a home run there because I have one sibling, and she was a match.

(07:55): I think the fact that I had her stem cells lessened the graft-versus-host disease (GVHD) that I've had. My doctors explained that they actually like a little bit of GVHD because it is a sign that your body is accepting the cells. It's one of those things where a little bit is good, but a big amount is terrible, potentially even deadly.

(08:20): I was discharged 16 days after transplant, which was relatively quick. I had a bad 10 days to two weeks at home, and then the remainder of the 100 days, which is sort of the period that they look at you the most closely after transplant, was really, really good, other than the skin GVHD. I mean, I was back to driving within about a month. I was doing chores around my house. I was jumping rope. I was taking vigorous walks. My first year was really, really good.

The Power of Community: “The recovery process is like a three-legged stool: your medical team, your friends and family, and your community.”

(08:58): I view the treatment and recovery process as being like a three-legged stool. There's your medical team, there's your friends and family, and there's the community. Your friends, family, and your medical team really don't know what you're going through after transplant. We all have different needs.

(09:16): I'm going to speak to my 4 billion male brothers on the planet on this. I feel that we are significantly below your 4 billion female sisters on the planet, in that men are not nearly as good at reaching out on these sorts of things as women are. My chat group is about 90% women, and they are the loveliest people, whom I view as every bit as much a part of my family as my sister, my friends, or anyone else. I recommend that you talk to other people who have been through this. I don't know how I could have gotten through it without those people, so bless them, really.

(09:51): I have so much love for everybody in the community. I can't say to anybody, "You're going to get through this," but I am going to say, "Think about what you really need, because there are resources to help you as you go through this process." BMT InfoNet is a wonderful one of those resources. I hope that the people who are listening to this are taking full advantage of what they have out there for them.