Jack Whelan: Surviving Waldenström Macroglobulinemia Thanks to Research and Clinical Trials
I was diagnosed with Waldenström macroglobulinemia, a rare and incurable blood cancer, in 2007. After conventional treatments failed to improve my condition, I have been fortunate to have participated in five different clinical trials that have given me access to world-class care with novel cancer medicines that have allowed me to live a full and active life.
I learned recently that my disease has relapsed; however, I have faith that scientific advances will help me get through this challenge. In fact, as a result of such advances, the U.S. Food and Drug Administration (FDA) is currently reviewing a new targeted drug for the treatment of Waldenström, and others are under evaluation in clinical trials.
Shortly after my 58th birthday, I began to notice that my daily power walks from the train station to the office were becoming more difficult. My first thought was that I must be getting older, but I had also experienced a few nosebleeds and generally didn’t feel as strong as usual, so I scheduled an annual physical with my primary-care physician.
The regular battery of tests ordered by the doctor revealed high levels of protein in my blood, so he referred me to a hematologist-oncologist at my local hospital. After more tests, which included a bone marrow biopsy, I was diagnosed with Waldenström macroglobulinemia, also known as lymphoplasmacytic lymphoma. It is a rare type of non-Hodgkin lymphoma; only about 1500 people are diagnosed with it each year in the United States.
Because Waldenström is so rare, my local hematologist had never treated anyone with the disease. I asked her where she would choose to be treated if she were in my position, and she said an academic medical center. I chose the Dana-Farber Cancer Institute in Boston, which has a program for patients with Waldenström. It has been one of my best decisions ever: My medical team there has been absolutely amazing.
Patients with Waldenström who are not experiencing symptoms are often not treated immediately. However, as my disease was already symptomatic, I began treatment right away. Because there are no FDA-approved treatments for Waldenström, my doctors borrowed from the approved treatment arsenal for other types of lymphomas and leukemias. I started with plasmapheresis, a blood-filtering process designed to lower levels of the protein IgM [immunoglobulin M] in my blood (the abnormally high blood levels of IgM cause many of the symptoms of Waldenström, including the nosebleeds I was experiencing), and weekly infusions of a therapy called rituximab (Rituxan).
Unfortunately, my disease did not respond to these treatments—my blood IgM levels remained high and my bone marrow was still overrun with cancer cells. After researching my options, I decided that rather than pursue further traditional chemotherapies, I wanted to try more targeted therapies, which seemed to be safer and cause fewer toxic side effects. The only way to do this was through clinical trials. Being cared for at Dana-Farber, by oncologists who focus on research and who treat Waldenström patients, gave me this opportunity.
I participated in four early-phase clinical trials. The first three had only modest effects on my disease. However, the drug that I received through the fourth trial, panobinostat, worked beautifully—my blood IgM levels came down dramatically, and although my blood chemistry biomarkers never reached normal levels, they were stable. In November 2012, after 18 months on the trial, I had to stop taking panobinostat because it became too toxic for my body. My blood pressure skyrocketed, and the headaches I had been experiencing became intolerable.
My disease remained stable for 10 months, even with no treatment, but at the end of March (2014), I discovered that my disease had relapsed. Since this time, I have begun yet another clinical trial, a combination targeted therapy of carfilzomib, rituximab, and dexamethasone; although still early, we’re seeing an initial response that is very good.
My diagnosis led me to make some pretty compelling changes in my life. I retired from my work as an IT research analyst at an institutional investment firm and became involved in advocating for a different, more important, kind of research—cancer research.
I have confidence that the scientific advances made by cancer researchers will continue to increase the number of safer, more effective options for patients, including those with Waldenström. But unless more patients participate in clinical trials, these options might not become a reality for everyone. Given that my continued well-being owes so much to my participation in clinical trials, I have become a passionate advocate for them; it is vital that we educate everyone about their importance and dispel the myths and misconceptions surrounding them. They offer an unparalleled level of care.
The AACR was saddened to learn that Jack Whelan passed away on November 16, 2017. We are deeply grateful to Jack for sharing his experience with cancer in the AACR Cancer Progress Report 2014 and for his tireless efforts to support patients and caregivers and to advocate for increased funding for cancer research. We offer heartfelt condolences to his family and friends.
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