In this edition, Gerald A. Soff, MD, shares his experiences as a hematologist and a hematologic patient, and he discusses how his myeloma diagnosis has – and hasn’t – changed his life. Dr. Soff is chief of the hematology service at Memorial Sloan Kettering Cancer Center in New York.
And, new this edition, hear more from our interview with Dr. Soff in our new Sound Bites feature.
When did you know you wanted to become a hematologist?
I have always been interested in science and the natural world. I was one of those annoying kids who constantly asked, “Why?” And I was also one of those kids who never learned to just listen to the teacher; I would try to think two steps ahead of the teacher. That was my way of learning – trying to derive new knowledge rather than listening to someone review the existing knowledge. I’m sure that made me an annoying student, but that quality has served me well in my career.
During college, I worked at the Union Carbide Corporation developing radioimmunoassays. I was only 18 years old, and I was already doing hands-on bench research, so this was a formative experience that cemented my interest in science – and, indirectly, hematology.
Then, after two years of college, I was accepted into an accelerated program at the Johns Hopkins School of Medicine. In that program, we were encouraged to look for a research project. I was a naïve 19-year-old with no knowledge of medicine, anatomy, or physiology, but I had that research experience from working at Union Carbide. I was also moonlighting as a blood-bank technician. So I figured, “Blood is easy; you don’t need to know anatomy.”
The first potential mentor I reached out to, a pediatric leukemia specialist, quickly realized I hadn’t thought through the multiple areas within hematology – and that he had better things to do than mentor me. He referred me to Jack Levin, MD, a coagulation specialist who had a track record of working with students. Having learned my lesson, when Dr. Levin asked me what aspect of hematology I was interest in, I said, “Blood clotting,” and he said, “Oh, great – that’s my area!” He took me under his wing, and we’ve enjoyed a 40-year friendship ever since. I give him all the credit for making me not just a hematologist, but a coagulation expert.
Did Dr. Levin offer any specific advice that you would pass on to younger colleagues or trainees?
He taught me many things, but, above all, he wanted us to give honest and harsh critiques of our own work, making sure that the projects and papers we produce are absolutely the best they can be. He taught me to set a high bar for my own work and not to believe my data just because I want to.
It seems like you were destined for hematology, but was there another career you considered?
For a while, I was debating between playing professional basketball and practicing hematology, but, at my tallest, I was only 5’8, and I never could run fast, and I couldn’t shoot a ball to save my life. Fortunately, height doesn’t matter as much in hematology – as long as you can see the microscope, you’re okay.
But in all honesty, since my first day in medical school, I never considered anything besides hematology.
“Since my first day in medical school, I never considered anything besides hematology.”
You were diagnosed with myeloma in 2015. Can you tell us about that experience?
To a certain extent, I diagnosed myself. Gradually, over a few months in the spring and early summer of 2015, I felt progressively more fatigued. My wife, Laurie, noticed it before I did, so she insisted I go see my primary-care doctor. I never had any significant medical issues, but I had routine bloodwork done every year or so, and, until that summer, nothing had been out of the ordinary.
I remember the next few days vividly: Everything was normal, except my total protein (which was always on the border between slightly elevated and high), was higher than normal. I attempted to ignore it, thinking, “Okay, I could be neurotic. A hematologist suspecting a hematologic malignancy based on one specific lab abnormality? To a hammer, everything looks like a nail.”
As a hematologist, I’m aware that an elevated total protein count – particularly if it’s chronic and has turned progressive – could be a sign of myeloma or monoclonal gammopathy of undetermined significance. So, I reached out to my colleague Ola Landgren, MD, for his advice, and he suggested I follow up with serum free light chain and serum protein electrophoresis tests.
I remember that day very well: On August 21, 2015, the first tests came back from the lab and they were abnormal. They showed a substantial M spike and, even more ominous, nearly undetectable levels of immunoglobulin A and M. The serum free light chain values had an almost infinite kappa-lambda ratio. When I saw those results, I knew I had myeloma. The following Monday, August 24, I had a bone marrow biopsy and a PET/CT scan that showed I had 70 percent malignant plasma cells in the marrow. It was, indeed, myeloma.
When the definitive diagnosis came in, I wasn’t shocked.
How did your wife and family react to the news?
Laurie and I have three sons who were 22, 20, and 17 years old at the time. When I shared everything that was going on, I tried to be calm and collected. I felt that if I broke down, my family would, too; if I conveyed a sense of confidence, my family would, too. I used the same two-step strategy I use when talking with my patients and their families: First, I told everyone about my concerns ahead of time so that when the diagnosis did come in, they were more mentally prepared to hear it; second, I presented it to them with hope and expectation. There’s a difference between saying, “Your dad has incurable cancer,” and “The cancer is incurable, but it’s controllable, and there are new, better treatments being developed.” I always want to give my patients hope and optimism, without being unrealistic. I did the same thing with my family. Laurie was sitting next to me when I was given the formal diagnosis, and as soon as she heard the news, I could see the wheels starting to turn. She has been wonderful and supportive during this experience. In addition to making sure I could eat meals and helping me get to appointments, she became a myeloma expert. She read articles about the latest myeloma research and the press releases from ASH, and she watched interviews with the leaders in the field. From all this work, she became so familiar with these names that once, when I told her that I had seen Brian Durie, MD (the celebrated myeloma specialist and chair of the International Myeloma Foundation) at a coffee shop when I was at the 2015 ASH Annual Meeting, she immediately texted me back, “Go get a selfie with him!” To her, people like Dr. Durie and Kenneth Anderson, MD, are rock stars. I didn’t run after him to get one, but I am so appreciative of the time and effort she devoted to learning about myeloma.
I encouraged my sons to ask questions about what was going on and to maintain a normal life. When I was diagnosed, Aaron, my middle son, was going into his junior year of college and planning to spend his spring semester abroad. His first response was, “I’ll cancel my semester abroad so I can be here if you need me.” It was very meaningful to me to hear him say that, but I told him what I needed most was for him and his brothers to go about their lives; if things didn’t go well, I’d let them know. I have three great kids who have been as supportive as I could have asked for.
How has your life changed – both your career and your life outside of medicine – since your diagnosis?
People ask me if my diagnosis made me a better doctor – if it made me more sympathetic to my patients. My response is, “I hope not.” I don’t have to drop a brick on my foot to realize that a person who comes in with a broken foot is in a lot of pain; I hope that it didn’t take me developing myeloma at 59 years of age to be an empathic, caring physician. I’d like to think that I now have a little more insight into my patients’ experiences, but I hope that I didn’t need to develop my own cancer to learn a lesson about empathy.
Honestly, this is the first time in my life that I ever asked anybody to help me with anything. I am the youngest of three sons, and I joke that my dad didn’t even know he had a third son until he had to pay for my bar mitzvah lessons because I never asked for anything.
When I was diagnosed with myeloma, it was the first time in my life I had to ask people, “Can you help me?” So, being in a position of having to ask people for help and seeing how people responded to those requests was a real eye-opener. I thought I had a good support system, but I had never put it to the test.
It showed me the importance of simple kindness: If someone asks you for something that might be a small inconvenience for you, remember that it is incredibly meaningful to the person asking.
When I was undergoing preparing for the stem cell harvest before my transplant, I needed someone to drive me to the hospital to get my leukapharesis catheter placed. My wife could not come with me that day, so I called a friend who had offered to help and asked him for a ride. He got off the phone, called his boss, and rearranged his work schedule so he could drive me to the hospital and bring me home when I was ready. For him, it was a modest inconvenience; for me, it was the most magnificent thing in the world.
Another small example: I was in synagogue one Saturday during the initial cycles of treatment, feeling woozy because I was having trouble eating. A woman and her daughter came up to me and said, “You don’t look so good. Can we walk you home?” It was a simple act, but to feel valued and loved as a friend in that moment was wonderful. We need to remember that the small gestures we make as neighbors, friends, and health-care providers can be so appreciated by the patients at the other end.
Many people over the years have called me for help when they, a family member, or a close friend has been diagnosed with cancer. Sometimes they just need help navigating the problematic system of getting into a cancer center; it only takes 15 minutes of my time to help them find the right person to talk to, but it can go a long way to comforting and reassuring them.
I also think it is important to keep a sense of humor. At one point, I had lost about 25 pounds, from a total loss of appetite and gastrointestinal issues during my chemotherapy. In our weight-obsessed society, that made me look “healthy.” I was in an elevator at Memorial Sloan Kettering Cancer Center when another physician (a bit overweight himself) asked me how I had lost so much weight. I told him it was very simple, “Less carbohydrates; more chemotherapy.” I stepped off the elevator as the shock registered on his face.
How is your health now? Are you working and able to see patients?
The myeloma is in remission now. I had nine months of triplet therapy under the care of Dr. Landgren and his phenomenal team. Sergio Giralt, MD, performed my transplant, and I’m taking lenalidomide as maintenance therapy as part of a clinical trial. I’m working like a fiend – maybe now more than before. But I love doing what I do, and I’m blessed to be healthy enough to do it.
This month marks the two-year anniversary of the diagnosis. So far, everything remains clear! Not too long ago, two years was the typical life expectancy after a myeloma diagnosis. All I can say is thank you to the physicians, nurses, scientists, and pharmaceutical companies who have given me and others a more promising future.