It’s possible you’ve never heard of multiple myeloma. The same is often true for patients who learn they have the disease. Many report initial symptoms that hardly seemed ominous, and in many cases, there were no early warning signs at all of the serious blood cancer.
Tom Mihelcic of Wheaton first experienced signs of trouble in 2007 after excruciating back pains forced him to cut short a ski trip to Vail with friends. At the time, the 54-year-old business consultant says he didn’t give it much thought, chalking the incident up to the normal aches and pains of an active lifestyle.
That changed when Mihelcic’s condition worsened later the same year, with pain so unbearable it caused him to collapse several times. Realizing he could no longer ignore his symptoms, Mihelcic finally sought medical treatment. Yet even after numerous MRIs, CAT scans and other tests, there was still no conclusive diagnosis.
It wasn’t until a nearly a year later, in April 2008, that Mihelcic received shocking news from his doctor. He had multiple myeloma.
“I had never heard of multiple myeloma; nor had anyone in my family,” says Mihelcic. “At the time, many doctors had not heard of it either.”
What is Multiple Myeloma?
Multiple myeloma is a form of blood cancer that develops in the bone marrow and affects the plasma cells, interfering with the body’s ability to produce normal blood cells and fight infection. Multiple myeloma is now the second most common blood cancer in the U.S. (behind leukemia), with new cases of the disease continuing to increase by nearly 1 percent every year. In 2015, an estimated 26,850 adults were diagnosed with multiple myeloma, and over 11,000 were predicted to die as a result of the disease.
Scientists do not know the origin of the disease, and it is not considered hereditary. However, experts believe the risk factors may be higher for males (two times more common in males of African-American origin), and for those of certain genetic factors or whose occupations involve exposure to chemicals or radiation.
A number of notable personalities have been diagnosed with multiple myeloma, including actor Roy Scheider, American businessman Sam Walton (founder of Walmart), syndicated advice columnist Ann Landers and, most recently, former NBC news anchor Tom Brokaw.
Severe lower back pain also sent Andrea Rosengarden of Highland Park to seek treatment in 2008. Results of an MRI and CAT scan revealed small lesions on her spine that doctors said had nothing to do with the pain. A bone marrow biopsy would later confirm her diagnosis: multiple myeloma.
“We never heard those two words; never knew it existed,” says Andrea’s husband of 29 years, Michael Rosengarden.
Andrea’s doctors mapped out an aggressive course of treatment including chemotherapy, and soon after, she received a successful stem cell transplant which put her disease into remission in 2009.
“We thought we were done, that we had found the magic bullet,” says Rosengarden, but in 2011, tests showed Andrea’s cancer had relapsed. “That’s when we decided it was time to find the real experts in Chicago, and called the MMRF for help.”
The Multiple Myeloma Research Foundation (MMRF) was founded in 1998 by former pharmaceutical executive Kathy Giusti shortly after she herself was diagnosed with the disease. The MMRF is a 501c(3) organization that has revolutionized the way medical research on multiple myeloma is done, and is widely recognized as the world’s leading resource for data collection and education as well as a source for private funding of multiple myeloma research, clinical trials and development of new treatments. The organization’s model is unique in that it brings together patients and medical professionals in a much more efficient and collaborative effort aimed at one goal — finding a cure for multiple myeloma.
“We support an end-to-end model in precision medicine, meaning that we are focused on finding the right treatment, in the right combination, in the right sequence for every patient as quickly as possible,” says Brittany English, MMRF signature events manager.
Since 1998, the MMRF has successfully advanced the research behind 10 new drugs used in the treatment of multiple myeloma (four of which were approved by the FDA in 2015 alone) — unprecedented in the world of cancer research. For many patients, access to these new treatment options has greatly increased their chances for remission, and has nearly doubled life expectancies.
“Because of the MMRF, science is a step ahead of her keeping the disease in check,” says Rosengarden of his wife’s current condition. Andrea is currently undergoing a promising new antibody therapy and is again in remission.
Tom Mihelcic considers himself one of the lucky ones, also crediting the work of the MMRF in developing some of the top cancer-fighting treatments available at the time of his diagnosis.
“I got multiple myeloma at a time that the MMRF had pushed and received approval of Velcade,” says Mihelcic. “If or when I go out of remission, thanks to the MMRF, I have multiple therapy options and genome studies to guide me in the right direction.”
After receiving 28 infusions in 2008, Mihelcic received a stem cell transplant of his own stem cells. Now 62, Mihelcic says that while he does live with some side effects of those treatments (including neuropathy in both his feet and hands), he has been in remission for the past eight years.
For Andrea Rosengarden’s family, finding a cure for multiple myeloma became a family mission. Michael Rosengarden, CEO of Autohaus on Edens Mercedes Benz, is no stranger to philanthropic causes, supporting a wide variety of nonprofit organizations over the years, but this time giving back was personal.
“It was important for all of us to get involved, because it’s for Andrea,” says Rosengarden. “We can look at Andrea and the only reason she is here is because of MMRF, so we see where the money is going.”
Rosengarden and his three adult children (Alyssa, Scott and Stephanie) have all become active participants in the search for a cure by getting involved in numerous events supporting the MMRF over the years, including the annual Chicago 5K Walk/Run program. In 2011, they started their own team, dubbed “Andy’s Angels,” and with the support of countless friends and family members, have raised nearly $200,000 for the cause.
“We see ourselves just doing what we are supposed to do,” say Andrea and Michael Rosengarden. “Life has been good enough to us to make it possible to help others battling this cancer.”
In fact, the MMRF has chosen to honor the Rosengarden family with the Spirit of Hope Award at their upcoming annual Chicago Awards Dinner on May 16.
“The Rosengardens, Chicago locals and longtime MMRF supporters, epitomize the true meaning of family, consistently demonstrating their devotion to one another, unwavering strength and commitment to finding a cure, “ says English.
This year’s Chicago Awards Dinner is particularly special for the MMRF as the organization celebrates its 15th anniversary. The event will again be held at the Four Seasons Hotel, and choosing Chicago every year as the location for one of the organization’s largest fundraising events has not been by chance. It was the place MMRF founder Kathy Giusti was living at the time of her diagnosis by doctors at Northwestern Memorial Hospital.
“The Chicago community has embraced our mission, work and event for 15 years and we are so grateful for the support and love we have there,” says Anne Quinn Young, vice president, development and strategic partnerships for MMRF.
An impressive group of both local and national spokespersons will take the stage at the event, including boxing legend, entrepreneur and author Sugar Ray Leonard, who will serve as keynote speaker. For Leonard too, the fight to find a cure for multiple myeloma is a personal one. His father is currently living with the disease.
“This is extremely special and we are privileged to have such an influential and philanthropic individual joining us in our mission to accelerate cures and save lives,” says English.
Chicago Cubs players Jon Lester and Anthony Rizzo (both cancer survivors and advocates) will deliver opening remarks at the event, and for the 12th year, actress and longtime MMRF supporter and honorary board member Bonnie Hunt will serve as mistress of ceremonies. More than 600 guests, including corporate leaders and philanthropists, are expected to attend the fundraising event.
For information on the MMRF Awards Dinner May 16 and other upcoming events, to make a donation, or to learn more about this organization, please go to MMRF’s website.
Multiple Myeloma Research Foundation’s 15th Anniversary Chicago Awards Dinner
When: Monday, May 16, 2016
Where: Four Seasons Hotel, 120 E. Delaware Place, Chicago
Time: 6 p.m. Cocktail Reception/7 p.m. Dinner
Dress: Business Attire
Save the Date: MMRF Team for Cures: Chicago 5K Walk/Run
When: September 18, 2016
Where: Montrose Harbor, Chicago
Start Time: 9 a.m.
Contact: races@themmrf.org or 203-652-0208
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