Introduction: A Life Full of Family and a Sudden Health Challenge
I am Barbara Richter, an 86-year-old former registered nurse, and a proud mother of five children, ten grandchildren, six great-grandchildren, with an ever-growing extended family. My story with Waldenstrom Macroglobulinemia (WM) began on December 27, 2012, when I was 75 years old. It all started with an unusual electric-like pain in my feet, which would only occur after lying down in the evening. Concerned about these symptoms, I underwent a blood test known as protein electrophoresis, revealing elevated levels of a protein called IgM. This discovery led me on a life-changing journey.
Diagnosis and Initial Treatment: An Unforeseen Revelation
Upon detecting the elevated IgM protein, my doctor referred me to a hematologist/oncologist for a second opinion. The diagnosis was a shock to both me and my husband, Dan – I had Waldenstrom Macroglobulinemia, a rare form of cancer. This disease, known as Waldenstrom’s, is a slow-spreading type of non-Hodgkin’s lymphoma originating in white blood cells called lymphocytes. To manage my condition, my oncologist recommended implanting a port in my chest, as intravenous chemotherapy had the potential to irritate my veins. My treatment journey commenced promptly on January 2nd, 2013, consisting of 8 cycles of R-CHOP, a combination of five different drugs including: Rituximab, Cyclophosphamide, Doxorubicin (aka Hydroxydaunorubicin), Vincristine (akas Oncovin), Prednisone. This was followed by maintenance therapy with Rituxan once every month for a year, lasting until January 2014.
A Decade of Stability: A Hard-Won Victory
For the next ten years, I experienced stability, with most of my lab results consistently within the normal range. However, in late November 2023, I encountered an unexpected spike in my IgM protein count, along with other abnormal lab reports. It was a challenging moment given my age of 86.
Enter Brukinsa: A Remarkable Breakthrough
At this critical juncture, my oncologist introduced me to Brukinsa (zanubrutinib), a revolutionary drug that did not exist when I was initially diagnosed. Its first clinical results were observed on December 1st, 2018, and it was approved for Waldenstrom’s treatment on September 1st, 2021. My DNA was analyzed at the Mayo Clinic in Rochester, revealing a positive result for MyD88, an inherited immune system disorder. Brukinsa proved to be particularly effective against MyD88, thanks to its targeted treatment approach. Patients with MyD88WT WM treated with this new drug achieved a 50% major response rate, including 27% very good partial responses (VGPRs), and an 18-month progression-free survival (PFS) rate of 68%. Starting with the regular dosage of 320mg daily, within just three months, my first lab results showed a remarkable drop in my IgM protein levels and positive outcomes across all my other lab parameters. It felt like a miracle!
Adaptation and Progress: Tailoring the Treatment
As time went on, my oncologist gradually reduced my dosage due to side effects, considering my history of medication sensitivity. Even at the lowest dosage of one 80mg tablet daily, I continued to experience positive results. The fact that limited research existed on this drug and very few studies included people in their 80s made my progress even more remarkable. My oncologist pointed out, “Just think, it took ten full years before you experienced this spike, and now, only one year later, you are in remission.” We both agreed it was time for me to taper off my targeted treatment, with a renewed focus on regaining strength. I was eventually taken off the drug Brukinsa, marking a significant milestone in my journey. What began as a year of chemotherapy infusions gradually transformed into the option for people to be treated with a prescription in tablet form. This transformation was made possible by remarkable research and development efforts, offering newfound hope to many.
Gratitude and Acknowledgment: And the Role of IWMF
I cannot express enough my heart felt gratitude to everyone who contributes to the International Waldenstrom Macroglobulinemia Foundation (IWMF). This non-profit organization plays a pivotal role in funding scientists committed to finding a cure for this condition. Without IWMF, the development and approval of a drug like Brukinsa within this timeframe might not have been possible. Given the rarity of WM, raising awareness about the latest treatments is crucial. My advice to others facing similar challenges is to remain hopeful and focus on the future. Do not dwell on the past. Initially, I aimed to reach the age of 85, but now, at 86, I have extended that goal to 95. It’s a goal well within reach, and I hope my journey can inspire others to embrace life’s challenges with optimism and resilience.
Barbara Richter
Saint Paul, MN
March 2024
If you would like to watch Barbara’s VIDEO Story version, click HERE.