We don’t know what we don’t know about why some people get myeloma
I hope the PROMISE study may come up with some answers
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My very first journalism teacher, way back in high school, taught me the importance of “who, what, when, where, and why” as building blocks of any news story.
“Why me?” is probably the second question every multiple myeloma patient asks, right after “How long have I got?”
We all want to know why we got this strange-sounding form of cancer. What did we do wrong? What were we exposed to? Did we inherit it? Or was it simply bad luck?
I had plenty to wonder about. Did it come from the secondhand smoke that was so prevalent when I grew up? What about all that malathion spraying over my hometown of San Jose, California, during my senior year of high school? Was I exposed to something when I lived near farmlands? Or what about my visits to the Fort Ord Army base in Monterey County? A 2022 Associated Press investigation revealed high myeloma rates connected to that site.
On top of all that, I don’t know my birth family’s medical history. Something could be lurking in my genes.
What we do know
Family history and exposure to toxins or radiation are known risk factors for myeloma. So are age, sex, and race; the risk is higher for those who are older, male, and Black. Health issues such as other plasma cell disorders or obesity can also raise one’s risk.
Aside from some of my possible exposures from many years ago, weight is also a factor for me. But these are just possibilities, not certainties.
At this moment, the answer to “Why me?” is an unsatisfying, “We don’t really know.” But it’s possible I’m looking at this the wrong way.
Are we asking the right question?
I recently read something startling from an associate professor of biology at San Diego State University. It was in a university profile of Svasti Haricharan, PhD, a breast cancer researcher, who initially wondered why some people get cancer while others don’t. But then she found another way to look at it: “Why is it that all of us don’t get cancer?”
That question astounded me. It reminded me of something I heard in a myeloma workshop about the difference between the number of people with myeloma precursors and the number who actually develop myeloma.
The National Cancer Institute says 36,000 new multiple myeloma diagnoses are expected in 2026, which is far fewer than the number of people — 3% to 5% of the U.S. population, or over 10 million people — in whom the myeloma precursor monoclonal gammopathy of undetermined significance (MGUS) will occur, according to the International Myeloma Foundation (IMF). Its chief medical officer, Joseph Mikhael, calls the difference between the numbers of those with MGUS and those with myeloma “unusual.”
Researchers are looking for the answers
So why is it that everyone with MGUS doesn’t get myeloma?
Again, we don’t know. But researchers with the PROMISE study may come up with an answer. They’re looking into the molecular changes that happen when MGUS progresses to myeloma. Rare Cancer News reported on this project in 2019, when researchers started recruiting participants to give blood samples for testing. The study has since met its accrual goal and is no longer accepting new participants.
I’m hoping this research will not just tell us why, but also what we can do about it, so my son doesn’t have to worry about getting myeloma someday.
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
Marilou Hitt
After a few lines of treatment, my husband just had CAR-T Carvyt (sp?) last month. So far, doing ok.
Martha McDermott
It does make one wonder. My friend grew up in Gilroy and was diagnosed at 48. White female. I wonder if the spray ir water affected the surrounding areas.
Martha McDermott
It does make one wonder. My friend grew up in Gilroy and was diagnosed at 48. White female. I wonder if the spray or water affected the surrounding areas.
Ruben
I got 4 Covid 19 shots , three months later (after forth vaccine) I got MM and AML together. Any one else got cancer after vaccination?
Sylvia J.
If I had the means (I’m a myeloma patient) ; I’d ask people from all over the world for all their info related to myeloma ; example did you have allergy as child ; all male /female ; age/weight etc/ herpes simplex virus as a child; grew up on farm or ? ; what is translocation or deletion ; symptoms ; m protien at diagnosis ; light chains at diagnosis . Basically a very detailed list of questions and come up with a data base ; throw into AI and see what kind of information Derives from that . Thankyou for your post, thought provoking to study people ‘whom don’t have cancer’ vs whom do have cancer,