A year before my diagnosis of multiple myeloma, in 2010, my husband Paul and I moved with our six children to Monterrey, Mexico, where Paul was helping to create a venture capital industry. We were so busy settling into a new country and getting our children integrated into school that when I started falling asleep during my private tutoring lessons in Spanish, I chalked it up to exhaustion from the move and adjusting to our new environment and new way of life.
It wasn’t until summer break and a trip back to Salt Lake City to visit our families that other symptoms started to appear, including blood in my urine, signaling a potentially serious problem. Worried that I might have kidney disease, I had a positron-emission tomography (PET) scan of my lower body, which showed holes in my hip and pelvic bones. Further tests determined I have multiple myeloma.
Although I hadn’t experienced any bone pain in these areas, I remembered that a couple of years before the diagnosis, I had cracked a rib while reaching over one of my children’s car seats to retrieve a toy. The rib never seemed to heal, but I was so busy taking care of my family, I didn’t have time to see a doctor. The truth is, I wasn’t really thinking about my own health care. I was just 43 at that time and in seemingly good physical shape. It never occurred to me that the cracked rib was a sign of a life-threatening cancer.
Making Treatment Decisions
After meeting first with a medical oncologist who recommended that I start treatment with bortezomib, I later saw a myeloma specialist who, because of my age and general good health, suggested I undergo a tandem bone marrow transplant to give me a shot at a potential cure. After watching my brother-in-law David die from acute myeloid leukemia (AML) at age 33 because he had waited too long to have a transplant, I decided not to waste any time trying different therapies that might not be effective. With six young children to raise, I wanted to increase my odds for a durable remission or, better yet, a cure.
I underwent the double transplant, followed by a year of a combination maintenance regimen of thalidomide, bortezomib, and dexamethasone, and then another year of dexamethasone alone, which kept the myeloma stable until a few months ago. Because disease progression is slow, it is giving me time to try a unique treatment approach for the disease. I’m enrolled in a study investigating an interleukin 17–targeting monoclonal antibody approved for the treatment of psoriasis, to see if the therapy will help both my psoriasis and myeloma. So far it seems to be working.
Accelerating a Cure for Myeloma
The experience of seeing my brother-in-law die from AML and then getting my own cancer diagnosis led me to patient advocacy and the launch of the CrowdCare Foundation and Myeloma Crowd (crowdcare.org and www.myelomacrowd.org), which strives to remove barriers to a cure for patients with multiple myeloma. Six months after David was diagnosed with AML he developed acute respiratory distress and was intubated and near death. At that point, my husband discovered that David had AML cells that express the CD33 antigen, which a new drug—gemtuzumab ozogamicin—targeted.
Gemtuzumab ozogamicin had received accelerated approval by the U.S. Food and Drug Administrated (FDA) for use in older patients with CD33-positive AML who had experienced a relapse. However, the drug was later taken off the market after clinical trials failed to show a clinical benefit. Nevertheless, we were granted use of the drug from the manufacturer, which enabled David to live another 6 months. [Editor’s note: Gemtuzumab ozogamicin is now FDA-approved for the treatment of adults with newly diagnosed CD33-positive AML, as well as for patients aged 2 years and older with relapsed or refractory CD33-positive AML.)
I wanted to spare other patients from experiencing what David went through in the last months of his life. I thought if we could aggregate patient data to ascertain cytogenetic patterns in multiple myeloma, we could develop a personalized service for patients that would enable them to become educated about the cancer, find the best treatment options for their specific subtype, and search for clinical trials based on their eligibility criteria. The result is HealthTree (healthtree.org), a patient portal that uses crowdsourcing to aggregate de-identified patient data to help accelerate a cure for multiple myeloma.
My goal with the CrowdCare Foundation and HealthTree is to find a way to cure myself and others with multiple myeloma. I want patients to become well-educated self-advocates so they can participate more fully in their treatment decisions and live longer, high-quality lives. To make faster progress in this disease, we need patients to be involved in clinical studies in more meaningful ways, and I’m hoping HealthTree will become a resource not just for patients, but for researchers as well.
Developing these online tools has helped me avoid the depression that often accompanies a life-threatening diagnosis, and it has given me hope and a sense of control over my life. I don’t want to just lay down hoping someone will come along with a new therapy to save me (even though I would love for that to happen). I know I have to be educated about the research underway in this cancer and contribute to making a cure possible, to save myself and others.
When I was diagnosed, I was given a prognosis of 5 years, and I’ve nearly doubled that expectation. I’m grateful to the advances in myeloma that have given me those extra years, but I want more. I have six young children I want to see grow into adulthood and a husband and life I love.
My dream is that someday I won’t have to think about myeloma—that it will be a disease in my past and no longer in my future.■
Jenny Ahlstrom lives in Salt Lake City.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).