multiple myeloma (MM)
Before I was diagnosed with multiple myeloma (MM) at age 34, my life looked very different from what it is today. I was a husband and a father. I had a full-time job at the Federal Bureau of Prisons, and I worked out a lot. And now? Well, I still work out a lot; that’s never changed, and I’ll always be a father. But the rest of it? It’s all gone away. And I couldn’t be any more at peace with it than I am now.
In early 2005, while vacationing with my family. I was working out in the resort gym. I received an excruciating pain in my shoulder as I completed a movement with the weights. An elderly man saw the grimace on my face and asked, “How long have you had shoulder problems?” I responded that I had never had any shoulder issues. The pain subsided, and I continued to enjoy the rest of my vacation. Upon returning home, I played basketball in my yard and again experienced that pain. I went to my family practice doctor to see if they could determine where the problem came from. He continued to move my arm up, down, and side to side and asked if the movement hurt. I said yes, and he concluded that I had bursitis in my scapula and prescribed me pain medicine to see if the pain subsided.
I did not accept that diagnosis and made an appointment for a second opinion from an orthopedic specialist whose standard protocol was an MRI and X-ray. After a few weeks, I returned to the clinic for the results. He explained that I had an extramedullary tumor called a plasmacytoma on my left scapula. I asked him to break that down and explain what a plasmacytoma was. He said that it was a cancerous tumor that was isolated in that one area on my scapula. After hearing those results, I was in shock. The first thing that I thought was, “Am I going to die?” That did not help after I got home and googled it, and the results showed that it was also called MM (which is non-curable). From there, he introduced me to an oncologist who ordered radiation treatment in that area. The six weeks of radiation treatment decreased the mass, and I felt back to normal.
Approximately eight months later, I felt excruciating pain again. This time, it was in my lower back. I returned to the orthopedic specialist, knowing he would order another X-ray and MRI. The results showed that I had a tumor in my T-12/L1 vertebrae and my ribs. I went back to my oncologist, and he ordered a bone marrow biopsy. The results showed that I had 35% plasma cells in my bone marrow and was diagnosed with MM.
I underwent eight days of radiation treatment to reduce the masses. Upon completion, my oncologist put me on a cocktail of medications to get my plasma cells down. I was on this treatment regimen for approximately four months. Before completing it, my doctor spoke to me and told me that I was a prime candidate for an autologous stem cell transplant (using my own stem cells). At the time, I was only 35 years old. He introduced me to the myeloma specialist at Duke Adult Bone Marrow Transplant Center.
I underwent apheresis in June 2007 to collect my stem cells. I started chemotherapy to deplete my immune system. I received my stem cells in August. I spent 25 days in transplant, but my body still experienced engraftment, so we thought everything was going in the right direction. Unfortunately, two months later, my doctor noticed that my donor percentage was still high. We talked about participating in a clinical trial. The clinical trial was an allogeneic stem cell transplant (using outside donor cells). We searched the bone marrow registry for a potential match; however, none was available. Since I am the youngest of 11 siblings (seven biological), the biological siblings were tested to see if they would possibly be a match. Fortunately, my oldest brother was the only perfect match. As he did his work-up to donate his stem cells, I took a cocktail of study medication to get my numbers down. I completed the trial medicine in February 2008. I underwent chemotherapy to deplete my immune system, then I received my brother’s cells. The transplant was successful. However, I did have a few side effects from the transplant. The most severe was graft versus host disease (GvHD). GvHD occurs when my body recognizes something foreign and tries to fight it. I did achieve a complete response from this transplant.
It’s now 2010, and I was experiencing pain again, but this time in my upper back. I reached out to my treatment team and requested a PET/CT scan. I told them I felt something different. They ordered the scan because they said I knew my body. The results showed I had a mass in that area (T3/T4 vertebrae). My myeloma specialist ordered radiation treatment in that area for eight days. After completing radiation, we discussed a third stem cell transplant. We searched the registry for a donor, but I still did not have one. She decided to bring my brother back for a third stem cell transplant (second allogeneic). I started the trial medication while my brother did his work-up. After completion, I checked into the hospital in April 2011 to start eight cycles of total body radiation (twice daily for four days). A higher dosage of chemotherapy followed this, and I received my brother’s stem cells over the next two days. This was the most vigorous of the three transplants, therefore, I had to be hospitalized. I spent the next 30 days being monitored for severe side effects. After 127 days of transplant, I was released after another successful transplant.
I started maintenance medication after this transplant. I was on it for approximately a year. I started feeling excruciating pain in my mid to lower back. I contacted my care team again and requested another PET/CT scan. Again, they said, “Thomas, you know your body.” This time, the results showed that I had a tumor on my T8/T9 vertebrae. I did another eight days of radiation to decrease the tumor. I spoke with my myeloma specialist about my subsequent treatment since I had become refractory to my previous maintenance medicine. She decided to place me on one of the immunomodulatory medicines. In 2013, my specialist noticed that my lymphocyte levels were dropping. Now, instead of stem cells, my brother harvested his lymphocytes for a donor bone marrow infusion; I had four of those infusions over the next seven years. I was on this medicine for approximately seven years until 2020.
Since I have extramedullary disease (tumors grow in the soft tissue and not the bone), I am tested bi-annually through imaging and bone marrow biopsies. In 2019, the PET/CT scan showed that I had fractured a rib. The rib healed on its own; however, when I returned in 2020, a tumor had grown on that rib that was broken. I immediately started radiation treatment for eight days in that affected area. After completion, my myeloma specialist changed my immunomodulatory medicine to a different form and added a monoclonal antibody. I was on this regimen for approximately a year and a half. I went on vacation to Las Vegas and Los Angeles to attend the Super Bowl. When I returned, I felt tightness in my left inner groin area. I thought it was tightness from all the activities from the vacation. This was near the time of my yearly workup. I got the results of the PET/CT scan, and it showed that I had a tumor in that area. I started 10 days of radiation to decrease the mass in that area. I had become refractory to that monoclonal antibody, therefore my specialist changed to a medicine in the same class. I am taking that combination of medicine which provides me with an excellent quality of life.
Earlier in my cancer journey, my attitude was, “Why me?” Over time (after relapsing from my first allogenic transplant), I’ve learned to accept everything that comes with this disease, including relapses, changes in medications, and the possibility of perishing from this disease. This acceptance changed my entire outlook. Now my approach is, “Why not me?” I’m not different from other people; I’m just unlucky. It’s not a matter of if but when my cancer will come back. That will happen, but I don’t think about it. When the cancer relapses, I and my treatment team will figure out what to do next.
Don’t get me wrong, I have thought about what happens when there will not be any new drugs for me, but I’m not preoccupied with this thought. I can’t spend my time thinking about something I cannot control. At the beginning of my cancer journey, I did whatever it took to survive. At that time, newly diagnosed patients with MM were only expected to live three to five years after diagnosis. This has changed with the development of new and improved drugs. I overcame those odds, and now I want to be a voice ― an advocate ― for all patients to make sure that they get the latest information about all the treatments available today so they, too, can live a long life with this disease.
I run a local support group in North Carolina and mentor people in person and on social media which I enjoy doing. I’m a trusted voice in the community, a person a patient can turn to if they feel down about their journey. They know I’ve been through a lot but still see my tenacity, humor, and strength. That helps to keep other people going when they are in the middle of their fight with cancer.
My advice for newly diagnosed patients is to learn your type of myeloma, not be afraid to advocate for yourself, and live your life to the fullest. You are always being watched. There will come a time when newly diagnosed patients look to you for advice. Be the voice for them to help alleviate their fears.