How One Man Defied the Odds and Found New Purpose After Being Diagnosed With Multiple Myeloma
Key takeaways:
David Emerson was diagnosed with multiple myeloma at age 34. At the time, the average life expectancy for someone diagnosed with this type of blood cancer was only 3 to 5 years.
After conventional treatments failed, he turned to a controversial therapy that worked — against all odds.
Now 65, David runs a nonprofit that helps others with multiple myeloma find hope and information.
In 1994, David Emerson received life-altering news. At just 34, he was diagnosed with multiple myeloma, a blood cancer that forms in plasma cells in the bone marrow. Back then, it was considered incurable, with most people living only 3 to 5 years after being diagnosed.
“So I said to myself, ‘In the next few years, I’m gone,’” David recalls.
David is now 65, so that was almost half his life ago. He says he’s surprised sometimes that he’s still here.
Today, David lives in Cleveland, where he runs People Beating Cancer, a nonprofit offering education and support to others dealing with multiple myeloma.
Conventional treatments were just the start
When David was first diagnosed, he pursued the recommended treatments, including radiation therapy and chemotherapy. “I did lots of chemo,” he says. “I was young, aggressive, and I said, ‘Bring it on.’”
Before starting radiation, David’s doctor asked if he wanted children. When David said yes, his doctor paused his treatment plan and sent him “to the floor that handles all of that” to preserve his fertility.
Later, when David and his wife welcomed a son through artificial insemination, he worried he wouldn’t live long enough for his son to remember him.
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“I had a hard time with that,” David says. “But now that he's 26, I don’t want to say I can die a happy man, but it’s this whole business of being thankful for things. It sounds a little corny, but it really does help me. Seeing him graduate from college was big.”
Despite his efforts, not all of David’s early treatments worked. After a stem cell transplant failed, David relapsed less than a year later. By 1997, his doctors told him there was nothing else they could do.
Turning to a controversial therapy that worked
Out of options, David pivoted. He sought out care at the Burzynski Research Institute in Houston, which offers a controversial treatment called antineoplaston therapy.
“If I’d known then how controversial [Stanislaw] Burzynski is, I probably wouldn't have done it,” David says of the Texas cancer physician’s unorthodox treatment involving infusions of peptides synthesized from blood and urine. “The problem is, it worked.”
Though it’s still not approved by the FDA, David says the therapy put him in remission. For 17 months, he underwent a grueling course of treatment — starting with 10-hour intravenous infusions every day for 7 months, followed by 10 months of taking capsules.
By 1999, David’s cancer was gone. “The bone pain was gone. MRIs were looking good. There was no more sign of any myeloma in my body,” he says.
He went back to his oncologist, who told him to keep doing whatever he was doing because it was working, David says.
Managing complex side effects
Over the years, David developed severe side effects from his cancer treatments, including “chemo brain,” nerve and joint damage, cataracts, and more.
“Basically, I had a lot of radiation to my midsection,” David says. “It eliminated all the bone pain and killed the myeloma.” But, he adds, it also killed many nerves.
Over the next 20 years, David’s leg strength weakened, causing him to have some difficulty with walking. By about 2000, he started receiving disability benefits. His wife became the primary breadwinner while he stayed home and became “Mr. Mom,” he says.
“There was a plus side to that, but I had to let go of my career and all the hopes and dreams you have,” he says. “So all of our finances changed. Fortunately, Mom and Dad helped a little, so we weren’t destitute. It impacted us, but we adjusted, and we lived.”
He adds, “Bad things happen to almost everyone in this world. You adjust.”
Paying it forward through education
These days, David has heart damage and a higher-than-average stroke risk as a result of his long-ago chemo treatments. He follows the Mediterranean diet and takes omega-3 fatty acid fish oil supplements to thin his blood. He also walks on the treadmill every day.
David says his life now is mostly about physical therapy, exercise, managing side effects, writing, and “paying it forward” by helping others with multiple myeloma.
“Very few people know about heart damage, bone damage, joint damage — all the things that can happen — and your oncologist isn’t going to tell you. So I can fill that void,” he says. “I don’t want to scare people. I just answer their questions in an intelligent way. It helps me cope.”
David writes about his experience with the Burzynski Clinic, acknowledging both the benefits and drawbacks of antineoplaston therapy.
“It’s expensive. It’s out of pocket. This guy’s controversial,” he says of Burzynski and the treatment approach he pioneered. “It worked for me, but let’s say, for argument’s sake, the odds are only 5[%] or 10% it will work. It might only stabilize the disease for some period of time.”
He also addresses common questions about more traditional treatment options, like stem cell transplants.
“I don’t say yes or no. In the ’90s, when I did it, it was supposed to be a cancer cure,” David says of his stem cell transplant, adding that there are now many other options. “These days, there are a dozen different chemos that have been trialed and developed and are referred to as novel therapies, which can translate to as good an overall survival rate as a stem cell transplant. And stem cell transplants have a much higher risk of side effects.”
A message of hope for those with multiple myeloma
David reminds others that the prognosis for people with multiple myeloma has improved significantly, noting that the average life expectancy after diagnosis has increased to 8 to 10 years. “So there are side effects,” he says of treating the blood cancer. “You might lose your hair, but you’re not going to die tomorrow.”
David encourages people who are newly diagnosed to stay hopeful.
“There have been maybe 12 chemo regimens approved in the past 15 years, and more are on the horizon,” he says. “There’s a lot to look forward to.”
For David, helping others has become his purpose. He says that he sometimes feels like he survived because he was meant to “pay it forward.” And now, it’s become a part of who he is. “It’s what I do,” he says.
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