Acute Lymphoblastic Leukemia (ALL): David's Story
David Lehmann
Prior Lake, Minnesota
Transplanted in 2021, CAR T-cell Therapy in 2023
Acute Lymphoblastic Leukemia
Many thanks to the Mayo Clinic Rochester and the American Society for Transplantation and Cellular Therapy for helping us share David’s story.
Prior to your diagnosis, what was your life like?
It was a busy time for our family. We were preparing for our son, Dane’s, graduation from high school. Our younger son, Brendan, is just one year behind Dane academically, so we were busy helping with their college choices and applications. Everything in my world was about going to their events, working my job in the healthcare industry, and taking care of the house and family.
How did you first notice something was wrong, physically?
When working in the yard, or doing strenuous activities, I would have to take lots of breaks or sit down. I’d be
sweating and tired. At first, I just thought, "How did I get so out of shape?" And then I started to get dizzy and lightheaded, or I’d see bright lights. Gradually this was happening even with low exertion. And then I knew – there’s something really wrong. It seemed I was not getting blood to my brain. I tried to get in to see my primary care doctor, or my cardiologist, but I couldn't get in to see them quickly. Eventually, I went to urgent care and they sent me immediately to the ER.
When the ER took labs, I had a WBC of 115,000. That’s really high. And then this strange coincidence occurred– I got a call from a doctor friend of mine. Typically, we only talk every couple of months. When I shared what was happening, he said, “Oh, Dave, I think you have cancer.”
Right before this, my then-wife and I started talking about retirement. We were about to be empty nesters, and starting to dream about life after work and fun travel… We met with a financial planner to see how things looked. And then, this. In one day, your plans can do a 180.
You mentioned that you work in the healthcare industry. What was it like to navigate, as a patient, the same systems you’ve helped to build professionally?
I knew it could be hard to get in to see your primary care doc right away. From my position, I’ve always tried to enter the healthcare system at the lowest care setting – to be a good patient and not overutilize the ER. But in this case, I’m glad I got to the ER when I did because it took forever, over eight hours, before I was seen. I did what I thought I was supposed to do as a “good patient” and utilizer of the system, but that meant I was very sick by the time I got help.
As soon as we saw how elevated my white cell counts were, it was obvious I needed to be transferred to a bigger hospital. Initially, I tried to get into the University of Minnesota, but after two days of getting pumped full of fluids and waiting for a bed, I learned Mayo Clinic had a bed. Looking back, I am ecstatic about the level of care I got at Mayo.
What was it like for you and your family to manage your initial diagnosis and treatment?
At Mayo, I was quickly diagnosed with Acute Lymphoblastic Leukemia, Philadelphia chromosome positive. I started chemotherapy in early September of 2019 and was inpatient for two cycles. For those two months, I did not get to go home or leave the hospital. For the first five months of my chemotherapy treatments, there were a lot of ups and downs, and moving between inpatient and outpatient care.
But all along, I knew that reaching remission was likely just step one. My Mayo doctors warned me that I’d likely need a transplant to be cured. I sought a second opinion, from Cleveland Clinic, and they confirmed the best course for curative treatment was a stem cell transplant. That was overwhelming. But UnitedHealthcare (UHC), where I work, has developed a clear system for supporting transplant care.
Can you describe that system, and did your coverage guide your choice of where to seek a transplant?
At UnitedHealthcare, we have created what we call "Cancer Centers of Excellence.” There are 30 or 40 centers nationwide. As an organization, we connect with transplant physicians with criteria-tested transplant protocols, best outcomes, and low fatality rates. A patient covered by UHC who is referred for transplant can go to any of these Centers of Excellence. For me, the University of Minnesota or the Mayo Clinic were obvious choices, and both are included as Cancer Centers of Excellence.
What did you do to prepare for transplant, and how did your employer handle your need for extended leaves of absence?
I took two different kinds of leave from work, “long-term leave,” which was unpaid but preserved my job, and “long-term disability,” which guaranteed 60% of my pay. I needed both. It also helped that, at the time, my spouse was still working. And, UHC offers a lot of really great benefits specific to transplant, like a $10,000 benefit for travel and
housing. This helped pay rent on a condo, where I lived outpatient, for my stem cell transplant. And it helped pay for tickets to bring my parents out to take care of me while my wife worked.
Someone had to drive me to the clinic every single day. I’d arrive at 5:30 in the morning, they’d hook me up to all the little bags with various infusions, and seven hours later they’d say, "See you tomorrow!" I was in the condo for about 75 days, until the end of May 2020, when I finally came home.
I was declared cancer-free, and everything was good. I believed I was home for good. I was walking, restoring my energy, and considering whether I would return to work or retire. After all this turmoil, I wanted to enjoy my life and have as much fun as possible. By this time, our younger son, Brendan, was in his first semester at college, and our older son, Dane, was entering his second year. I thought things were returning to normal.
It sounds like your return to normal life was interrupted. How so?
Two things happened – my marriage ended, and I fell out of remission.
In September of 2021, I discovered my marriage had failed. Before this, from my point of view, there was no sense that anything was wrong. After my transplant in 2021, I was seriously considering retiring to spend more time with my wife, as we had just become empty nesters. By then, both our boys were off at college. Unaware that things had changed, I thought we might start to travel and enjoy life together. The separation was an absolute shock out of the blue.
I was devastated. When my sons came back from college at Thanksgiving, we told them we were getting a divorce. From that time forward, I found myself alone. My ex-wife moved out, and the kids returned to college. I required therapy to find my purpose in life without my spouse of 24 years. This was by far the most challenging situation I faced during my cancer journey.
After my separation, I focused my energies on work to heal myself. I was working full-time when I started getting these weird headaches over my right eye. It was the worst pain I’d ever had. I couldn’t function. The first time it happened, I was on a conference call, and I had to tell them, “Sorry, I have to get off.” Eventually, I was getting 40 or 50 headaches a day, with five minutes of reprieve in between. The doctors initially said they were “cluster headaches” or migraines, but the pain got worse and worse until I was fainting.
At this point, my brother and his wife drove up from Sioux Falls to be with me. I’d been resisting returning to the hospital. I’d say, “No, I’m better. I just wanna lay here, please.” But my brother and his wife insisted, “You have to do one thing – go!” I crawled to the car, lay in the backseat, and passed out. At the hospital, when they finally did a lumbar puncture, they found cancer cells in my spinal fluid. While my stem cell transplant had seemed successful, for 18 months, the cancer hid. It can do that, hide in the testicles or in the spinal fluid.
It’s easy to imagine how hard it would be to hear that news, after all you’d been through.
It was extremely shocking because I’d felt so good before the headaches started. To hear “the cancer is back” was a tremendous blow. I thought: How am I going to do this again? What’s the therapy? Who is my support system going to be? It was much more difficult to face, without my spouse beside me.
Did you return to the Mayo Clinic for care?
Yes, going back to Mayo helped me to feel at ease quickly. I trusted them to know the right plan of action. Right off the bat, they suggested CAR T-cell therapy. It’s pretty amazing how it works.
First, they extract your T-cells from your blood, then they send those T-cells to a pharmaceutical company (different companies depending on the disease and treatment). The pharmaceutical company modifies the T-cells to fight your specific cancer, then sends the modified cells back to the treatment team to infuse.
I had my CAR T-cell therapy infusion on March 6th, 2022. Incredibly, I was able to do it in the outpatient clinic. Still, I needed 24/7 care, as I was going to the clinic every day. My sister and her husband came, and then my brother and his wife, and later my parents — a combo of all of them were my amazing caregivers.
Maybe seven days after the CAR T-cell therapy, I developed cytokine release syndrome (CRS), which can cause fever, low blood pressure, and other side effects. They brought me inpatient, and every day they’d give me this test to write out a simple sentence. For days, I couldn’t write. I knew they were asking me to do a simple task, but I didn’t know how. I didn’t even know who the president was. I was totally out of it. It was super scary, but after two or three days, it passed. I got better.
What’s it like now, two years later, to be totally cancer-free and treatment-free?
Recently, I was back at Mayo for a routine procedure, and when the doctor walked into the room, he said, “So you’re
the medical miracle.” I was shocked. I’d believed my cancer recovery was like many other survivors. Later that day, I shared the doctor’s comment with my Hem-Onc nurse. She laughed and stated that my recovery was absolutely not common and that I was an “n of one” - the only Mayo Rochester adult patient who had successfully been treated for PH+ ALL with a BMT and CAR T-cell therapy. While this was shocking and somewhat scary to hear, it proved to me that miracles can and do happen!
By January of 2023, I was back at work full-time. Luckily, my largest client, whom I’ve worked with for the past 14 or 15 years, stayed loyal through my extended absence.
Besides my work, I enjoy hanging out with friends, and I play pickleball three or four times a week at 6:30 AM. I also collect vintage pinball games, so that provides lots of fun.
Do you credit your recovery to any particular mindset that helped pull you through this experience?
My focus was 100% on beating cancer. I never said, “Tell me my chances.” I focused on: How can I get better? What do I need to do to be the best possible patient?
I know at some point Mayo gave us a DVD on what to expect from stem cell transplant. My parents watched it, and later they said, “We kept waiting for the other shoe to drop!” I have still never watched that DVD. For me, the goal was to stay positive.
It also helped my mindset to know people were praying for me. Much of that care and prayer came through my Caring Bridge web page. So many people -- friends of friends of friends -- reached out, sent prayers, and appreciated my updates. My ex’s church sent me Care Bears. All this made a huge difference to my healing. There were groups doing fundraising for me and my family. We didn’t ask them to do it, but it was a huge help that we were blessed to receive.
In what ways did your transplant experience impact or change who you are today?
The one thing I’ve learned is “Don’t sweat the small stuff!” Be more patient, more understanding, and forgiving. For example, a few days ago, my son backed into the garage door, rushing to get to work. Before, I might have blown up. But now, when he told me, I was able to put it into perspective -- accidents happen, and no one feels worse than he does. It’s better to be less judgmental and calmer.
I am forever a work in progress, we all are, but I keep that goal in mind. I had both my sons over last weekend, and we just relaxed and played games. They are both big board game fans. They play these super complex games like Slay the Spire, and I’ll ask them, “What in the world are we trying to do here?” It’s an impossible game, but I enjoy every second.
Mayo Clinic is one of the largest providers of bone marrow transplants in the United States. It has performed more than 10,000 stem cell transplants at its campuses in Arizona, Florida, and Minnesota. Since 1963, Mayo Clinic has been at the leading edge of transplant research worldwide, enabling patients to be among the first to benefit from innovative therapies and clinical trials. Learn more about Mayo’s collaborative care and excellent results at mayoclinic.org.
The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.