Two Diagnoses, One Legacy: A Son’s Myeloma Journey After His Mother’s Loss
Jeff
State: Maryland
Congressional District:
Diseases
Cancer, Rare Disease
Issues and Challenges
Jeff has encountered: Rare / Underserved Disease
My Story
In May 2020, at the age of 56, I had a routine blood test done which showed abnormal markers associated with MGUS (Monoclonal Gammopathy of Undetermined Significance). MGUS does not need to be treated but should be monitored, as in a small number of cases, MGUS can progress to a more serious blood disorder, multiple myeloma (MM). 1% of MGUS cases progress to MM each year, and about 20% of MGUS cases progress to MM at some point in the person’s life.
I was monitored by an oncologist through 2023 and had two bone marrow biopsies during this period. The markers and biopsy results continued to deteriorate until I was declared to have smoldering multiple myeloma in 2023, a precursor to a full MM diagnosis. In fact, the markers were close enough to full-blown MM that I decided to be treated for MM in early 2024. This included a quad-drug chemotherapy treatment and autologous stem cell transplant. Currently, I’m in remission (knock wood) and feeling good.
My mother was diagnosed with MM and passed away shortly after in 2006. The number and effectiveness of MM treatments at that time were limited. Though a genetic link to MM has not been discovered as of yet, family history is considered a risk factor. My mother’s ordeal helped to educate me on MM well before I was diagnosed.
Though I have been unlucky in contracting MM, the MGUS diagnosis allowed me to follow the progression to MM very carefully. I’d consider myself “lucky” in that I have not experienced some of the worst symptoms of MM, such as bone and organ damage. Many MM patients’ first indication that they have the disease is when they report significant bone and/or organ injuries. Thus, early detection is important, if possible.
It was scary to be given a diagnosis for an incurable disease such as MM, especially when first given. I have been blessed to have a network to help through the mental part of dealing with the disease, including family, doctors, and fellow MM patients who are happy to relate their common experiences.
In the 19 years since my mother was diagnosed, many advancements have been made in treatments such that the life span of survival with the disease is much improved. The National Institutes of Health (NIH) has been instrumental in working on improved treatments for cancers with no cure, such as MM. More effective treatments with fewer side effects are being developed every year, such that more MM patients are living longer, higher-quality lives. Sustaining NIH’s research investments along with providing the associated insurance coverage is paramount for the long-term benefit of MM patients and to possibly discovering a cure for MM in the future.
I intend to advocate for MM to help keep the positive momentum going. My outlook as an MM patient is encouraging in light of what happened to my mother and the current environment of improving treatments.
My Motivation and Inspiration
As a recently diagnosed multiple myeloma patient, I have been involved with associated support groups where myeloma patients in various stages of the disease and treatments share their stories and provide help to each other. I have found it rewarding to talk with patients like myself, where I have felt the benefits as well as assisted others. I have particularly been positively motivated by these interactions and would like to be involved in advocating for multiple myeloma research and treatments on a more national scale.
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