Before being diagnosed with cancer, I had lived under the impression that all cancer was treated the same, that treatment lasted a limited amount of time, and then was done. You either responded to treatment or you didn’t. If you did respond, you were in remission. If you didn’t respond, you would die. I have been surprised to learn that treatment outcomes are far from an either/or equation.
My diagnosis was multiple myeloma, a rare, terminal cancer. They gave me 2 to 3 years to live. I did not fit the typical myeloma profile of male, elderly, and African American. I was female, 29, and white. My diagnosis was delayed because my blood work wasn’t typical either. Treatment, radiation, and chemotherapy started immediately. The chemo was horrible, but it was the current treatment for multiple myeloma.
This chemotherapy did not work for me, so the next step was an allogeneic stem cell transplant. We thought that was our last hope. It worked.
I became involved online with other myeloma patients. It was amazing to hear what hundreds of other patients had experienced. I learned that a 12-year remission after transplant, like mine, was extremely unlikely. I had survived 14 years, but most people were only living 5 to 10 years after diagnosis. I also learned there were many types of myeloma based on different genetic characteristics. Thankfully mine responded well to the transplant.
After 12 years, that familiar bone pain came back. In 2010, there were new tests available, like the Serum Free Light Chain test, that confirmed the return of my myeloma. Even these test results were not typical for other myeloma patients. Over time, other tests would show that I had a large plasmacytoma on my rib that had been growing for some time. As I shared my story and read about others, I was surprised that everyone had a different story and everyone reacted to this disease and its treatment differently.
My cancer was back, and my treatment journey began again. In the years since my initial diagnosis, they had developed therapies and combinations that could be used depending on the state and type of disease. I had radiation on the rib tumor and started systemic chemotherapy. I responded to this treatment and tolerated it for about a year, which then allowed me to live treatment-free for another year. Many people I was in contact with were doing this same regimen, but they all had different responses. The side effects were universal, but the severity was all over the place. Some people did not respond, while others responded for a short time and then moved on to other options. Some did not survive this treatment at all as the cancer spread quickly.
Since then, I’ve developed kind of a cycle with my myeloma. When new bone lesions or plasmacytomas emerge, we treat them with radiation, followed by systemic chemo treatments, something new each time. This has been the practice for the last 8 years. I generally respond quickly to new therapies and have mild side effects, but we never know how long a treatment will work for me. Sometimes they never really work and we just move on; or the therapy may work quickly but only for a short time. I am always discussing with my doctors what the next option is, just in case. One thing all myeloma patients can say they have in common is that treatment is a wild and unpredictable ride.
My understanding of cancer has dramatically changed in 23 years. Although there is a lot of useful information that can come through support groups and research, I would encourage newly diagnosed myeloma patients to not rely on others’ stories to inform their own path. I would tell them to find a doctor who truly understands myeloma and is willing to collaborate with other myeloma experts.
The most important thing is to be your own advocate or find someone that can be that for you. Fight for doctors to listen to your pain and other concerns. Ask any questions that plague your mind. Every patient has a story, and every story is different. This was surprising to me, and even after 23 years, I am still learning to navigate it.
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