My Journey with Multiple Myeloma: A Decade of Resilience and Hope
Kevin
State: Minnesota
Congressional District:
Diseases
Blood Disease, Cancer
Issues and Challenges
Kevin has encountered: Access to Medicine, Insurance Issues, Rare / Underserved Disease, Financial Assistance, Prior Authorization
My Story
I was diagnosed with multiple myeloma ten years ago. I was newly married, and we were looking forward to a new chapter in our lives without kids. Unfortunately, it was not the chapter that either of us envisioned. The initial shock and fear were overwhelming. Googling multiple myeloma was a further mistake, as the information was very out of date and gave me three years to live. Further frustrating was that I was misdiagnosed by a general practitioner for three years, despite my bringing up my fatigue and dropping blood counts. While the correct diagnosis brought answers, it did not bring relief.
My wife and I would have agreed to anything the hematologist recommended, as we were dumbfounded. The initial treatment plateaued after six treatments, and I then went for a stem cell transplant. Unfortunately, unknown to us, despite all its trials and six months of recovery, it would not impact my cancer at all. I came out of it as sick as I went in, and now my life was really flashing before my eyes. I was put on a clinical trial that gave me another seven months but then my cancer came back again. Over the next 6 years I was put on multiple treatments that suppressed but never eliminated the cancer. I never had a break from treatment and was quickly running out of treatment options! To say we were anxious would be a gross understatement. However, unlike my initial diagnosis, I was now determined to research and understand my options beforehand and vigorously advocate for modifications in treatments as needed for my quality of life.
Fortunately, during the last few years immunotherapy was making big leaps in hematological cancers. I and my doctor had numerous discussions on the various treatments, and I was finally approved for my CAR-T treatment. I had my T cells withdrawn early September 2023 then had eight very anxious weeks while my modified T cells were manufactured. My cancer was roaring back and was put on an old school bridging therapy to make it to my November 2023 treatment. While it was a bumpy first month, it has been an absolute game changer for me! Within a month I was in total remission and continue to be there eighteen months into this one and done therapy. No more chemo treatments so far! I feel the best I have in 20 years. My quality of life is great! We now have the freedom to travel without having to plan around or skip treatments. When first diagnosed with this incurable treatment would I have imagined this being possible. I know my myeloma will eventual come back but I am hopeful there will be another advanced treatment when that does occur.
These immunological treatments are the culmination of a lot of basic research that started with NIH grants. No pharmaceutical company would have ever thought of combining a llama virus vector with someone’s immune cells to kill their cancer, which is what my treatment did, without this type of research. My treatment, and other treatments, are truly game changers for people who never had a hope of normal life before. However, they, and the next generation of treatments, are once again only possible via the multitude of basic research studies that are funded by NIH grants. I hope my story helps you understand and support the need for maintaining funding these NIH grants.
Beyond treatments, I, along with my doctor, had to advocate with my insurance company to approve, then continue to approve, treatments that improved my overall quality of life. You are the expert on you, and the more involved you are in your journey, the better your journey will be.
My Motivation and Inspiration
To help give back to others and share my learnings on my journey, I have co-led a multiple myeloma support group for over eight years and have personally coached other patients and blogged about my CAR-T treatment. My journey has taught me the importance of advocating for oneself to your health team, your insurance company, and your caregivers. You are the expert on you, and the more involved you are in your journey, the better your journey will be.
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