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Rare Cancer Doesn't Need to Be Fought Alone

A diagnosis of Waldenstrom's macroglobulinemia can be scary, but it doesn't need to be faced alone.
BY Davy James
PUBLISHED March 18, 2016
A cancer diagnosis can be profoundly frightening, rattling a person straight to the very core of their existence. This situation can be even more terrifying when the diagnosis is a rare form of the disease that offers little in the way of answers.

Such was the situation Arnold Smokler found himself in back in 1994, when the retired pharmacist was diagnosed with Waldenstrom's macroglobulinemia (WM). With little information available and no support groups to find, Smokler went on to establish what would become the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), a group that has evolved from just 21 people to more than 8,000 strong.

“We try to support everyone, whether they’re in Indiana or India,” says IWMF President Carl Harrington. “And that also means caregivers, families and friends as well as patients, while we advance the search for a cure.”

This rare form of B-cell lymphoma is diagnosed in only about 1,500 US patients annually. While there was once a lack of information available for patients with WM, the foundation now offers a comprehensive wealth of resources on its website. In addition, the IWMF also provides educational programs for patients and supports research efforts for improved treatments, with the ultimate goal of finding a cure.

“We’re all tired of having this disease,” Harrington says. “The IWMF is volunteer-led and volunteer-funded. Most of our board members or their spouses have the disease. And almost all of our money comes from our membership. Because we’re an orphan disease, there aren’t many of us, and there is no federal funding. So we’re the folks who financially support our work.”

Since 1999, the ongoing fundraising efforts of the foundation have led to more than $8 million invested in research to help fight the disease.
The foundation’s comprehensive services for members include more than 55 support groups worldwide and online forums that encourage personal interactions among patients and survivors. 

“And our LIFELINE program allows patients to talk one-on-one with folks who have been there, seen that and done that,” Harrington adds.

The IWMF also sponsors an annual educational forum available to all WM patients and their caregivers. These forums include speakers who are specialists involved in varying aspects of clinical practice and research in the field of WM. This is in addition to a robust platform of information on the foundation’s website and a quarterly newsletter.

“The first thing patients should do is become educated because there is a host of different treatments available,” Harrington says. “We give people a chance to explore the various options on their own, encouraging the use of second opinions from physicians and learning from people who have had similar experiences. They can then better understand the issues that they need to think about.”

“Many of us tend to hang around a while because WM is treatable, so patients go through periods of treatment, remission, relapse and treatment again. Everybody’s WM experience is a little different,” Harrington says. “Most oncologists don’t have a lot of familiarity with our disease. They may see only one or two of us in their careers. That’s another reason why it’s very important for patients to become knowledgeable. We work hard to educate patients so that they can become their own best advocates.”

Beyond educating patients, the IWMF has partnered with the Leukemia & Lymphoma Society for a program dubbed the Strategic Research Roadmap Initiative, which sponsors an annual medical conference and a research program designed with a four-pronged approach to finding a cure for the disease.

All of these efforts are aimed toward the IWMF’s long-term goal to no longer be necessary.

“I hope we find a cure and close the IWMF,” Harrington says. “If not, I hope we continue making progress in terms of treatment so that remissions last longer, treatments have fewer side effects and the disease becomes more like diabetes or high blood pressure that’s controllable as long as you take your medicine. But even that isn’t really good enough. WM cells would still be in our bodies and could still run amok when treatment is stopped. And there would still be significant potential for side effects to increase over time or, even worse, for resistance to develop that renders drugs ineffective. That’s why what we really want to do it is to find a cure for WM and a way to prevent it. We’ll put ourselves out of business because no one else will ever again receive a diagnosis of Waldenstrom’s macroglobulinemia.”

 
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