Shelley Lehrman: Beating Waldenström Macroglobulinemia Thanks to Ibrutinib
When I was diagnosed with Waldenström macroglobulinemia in 2011, I was shocked. I was just 47, with three kids, a great husband, a crazy dog, and a busy life. After my disease failed to respond to the first treatment assigned to me through a clinical trial, I immediately enrolled in a second clinical trial. I was assigned ibrutinib (Imbruvica) as part of this trial and have been taking it ever since, and I feel great. My life is as busy and full as it was before my diagnosis.
My journey with cancer began in February 2011. While showering, I noticed a few lumps in my neck that hadn’t been there before. I wasn’t really worried, thinking they were pimples or something else that would soon go away. But they didn’t go away. So, when I saw my primary care physician for my annual physical the following month, I asked her to check them. She didn’t think they were anything to worry about either, but I knew something wasn’t right and asked her to order some follow-up tests.
A computerized tomography (CT) scan of my neck and chest revealed that I had enlarged lymph nodes. However, after follow-up blood tests, the conclusion of a staff review of all the information was that we should hold off on any treatments because a virus may have caused the enlarged lymph nodes. It was hoped that my symptoms would disappear, but they didn’t. As a result, in June 2011, I had a biopsy of the lymph nodes and bone marrow. The biopsy results showed that I had Waldenström macroglobulinemia.
I had no idea what Waldenström was. My local oncologist told my husband and me more about the disease and recommended that I immediately start treatment with bortezomib (Velcade). We listened, and went home and researched the treatment. We learned that bortezomib had a lot of side effects, so we did more research. This led us to Dr. Treon at the Dana-Farber Cancer Institute in Boston.
At our first visit to Dana-Farber in September 2011, we were told that the best approach would be to watch my symptoms and wait. However, by our second visit, in January 2012, I was feeling tired all the time and the markers of disease in my blood showed that my condition had deteriorated. Dr. Treon told us it was time to do something and suggested I enroll in a clinical trial testing carfilzomib (Kyprolis) together with rituximab (Rituxan).
After a number of rounds of carfilzomib and rituximab, the side effects I was experiencing started mounting and my disease wasn’t responding. So, in June 2012, I discontinued the trial.
At Dr. Treon’s recommendation, I immediately enrolled in a clinical trial testing ibrutinib. I went home with a month’s supply of pills and the next morning started taking them. Within days, my energy had increased, and at my one-month checkup, all the markers of disease in my blood showed improvement and I hadn’t felt so good in a long time.
I am still taking ibrutinib and have follow-up visits every three months. I feel apprehensive at each of these visits, but so far, so good. I continue to do well. I have my down days, but after hugging my kids and husband a little bit tighter, I keep going.
Participating in clinical trials was an easy decision for me. I feared my loved ones could be stricken with the same disease in the future, and I knew that by taking part I was doing something that could potentially benefit them. I also felt that I had more control over my health care because the clinical trials gave me choices fueled by the most recent research.
I am so thankful for the opportunity to take part in clinical trials. At my first checkup after being assigned ibrutinib, Dr. Treon thanked me for taking part in the trial, and it was then I realized that researchers need participants as much as participants need researchers, and that this is the way cancer will be cured.