My journey began with a pathology report of my bone marrow biopsy. My knowledge of lymphoma was so limited at this point that it was not until I had a brief conversation with the pathologist that I confirmed that lymphoma was a kind of cancer.
My first reaction was to call my brother Matt, who directs oncology research at Merck. This connection has been invaluable in helping me establish personal connections with specialized experts and giving me confidence in my interpretations of medical research.
After a fairly brief emotional shock, I quickly began to research Mantle Cell Lymphoma using the proteins identified in my pathology report to limit a google search. At this point, I was looking for legitimate resources which could provide me with a clear overview of MCL, potential treatment options, and a sense of my prognosis.
Resources like the Leukemia & Lymphoma Society were useful in giving me a very clear but very general overall map of how to think about MCL. It was also the first window into personal connections. Following up through a connection thorough my brother Matt, I received an email that was much more focused on the particular details of my situation from a Beatrice Abbetti, Director of the Information Resource Center at the Leukemia & Lymphoma Society.
This allowed me to develop a useful resource, a list of questions to ask when meeting with oncologists. This question list was helpful for two reasons; I felt confident that I was gathering all of the information that was important to thinking about my treatment strategy options and I felt confident that these questions would enhance my credibility with oncologists, so they would take me seriously.
And through my brother Matt, I was able to have access to the very latest knowledge. This is a screenshot from an oncology conference in Copenhagen which my brother Matt recorded.
The first oncologist I met with strongly recommended a course of action, mentioning that I could seek a second opinion if I wished. He emphasized that in regard to the treatment of MCL, there was a strong consensus. His recommendation was so strong that he scheduled a minor surgical procedure for me.
Because of my research, I knew only 4,000-5,000 people re diagnosed with MCL each year. I recognized that local oncologists do not have the time, expertise, or incentive to engage with the most recent research for patients they would at most encounter only once or twice a year.
In fact, my research encountered a roundtable of experts, who agreed that there are more than a dozen treatment strategies for MCL, joking that the only consensus is there is no consensus.
Even making sense of which factors associated with MCL are indicators of future health is still undecided in the medical field, making it even more challenging for me as a patient as I made sense of data like this slide.
Being able to see a recording of the international presentation gave me access to longitudinal data for a range of MCL treatment strategies.
This data is difficult to make sense of, both emotionally and cognitively. But this kind of information did point me to many specialized themes for further research. In about a 6 week period, I collected more than 50 articles from peer-reviewed medical journals.
They showed an area of medical research that is very much in process; some of the most exciting research in all of medical science, like CAR-T cell interventions are underway.
My research was extensive enough to engage with signalling pathways in the cell. Cancer cells are able to turn off the red flag that would identify them as cells gone awry, preventing the immune system from killing them. Ibrutinib is a BTK inhibitor which prevents cancer cells from turning off the red flag. This drug has a market value in excess of $20 billion because of its potency and limited side effects. The stakes for me are high, so my engagement with this research has been more extensive than most oncologists who treat a small number of patients.
Given a purchase price of more than $20 billion, the economic stakes for Ibrutinib are high for many of the actors in the medical field, from researchers to hospitals, insurance companies, and doctors. With high stakes, the resources for marketing Ibrutinib are extensive, as the images of the marketing materials at ASCO, a major oncology conference attest.
