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Waldenstrom Patient Stories: Finding Strength

Waldenstrom Patient Stories: Finding Strength
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Published on August 6, 2020

Peter's Diagnosis of Waldenstrom Macroglobulinemia

When Peter DeNardis was diagnosed with Waldenstrom macroglobulinema (WM) 17 years ago, all he knew was that he had an incurable cancer. He had never heard of this rare type of non-Hodgkin lymphoma. A married father of three in his early 40s, DeNardis worried about how his illness would impact his family. How would his passing affect them emotionally and financially?

“After a few numb, tear-filled days of fretting and worrying, my wife and I made the resolution to face the disease head-on — to hang on to the notion that science, faith, and positive energy would find a way to ensure that I would live to see my children through all the important moments in their lives and that we should focus on getting the most out of every day we had left to be together,” he wrote in a 2018 blog post. “And we haven’t looked back since!”Family events continue, so will I

International Waldenstrom’s Macroglobulinemia Foundation

DeNardis found support through the  International Waldenstrom’s Macroglobulinemia Foundation (IWMF), a nonprofit that provides information, support and resources for patients with WM. It was started by Arnold Smokler, a retired pharmacist who was diagnosed with WM in 1994. It now has more than 8,000 members with support groups and affiliated organizations on every continent.

“It’s been my primary source and still is 17 years later,” said DeNardis, 60, of Hopewell Township, Pennsylvania, outside of Pittsburgh. “That’s not to say there aren’t other sources of information, but if you want it to be specific to Waldenstrom’s it really is the only one. There are other sites, like the Leukemia & Lymphoma Society, but that’s for all lymphoma patients, which doesn’t mean it’s bad. It is good information. It’s a supplemental source of information for our people.”

Survival Rate for Waldenstrom (WM)

About 1,000 to 1,500 people are diagnosed with Waldenstrom each year in the United States, according to the American Cancer Society. According to the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) database (based on people diagnosed between 2001 and 2010), the overall relative 5-year survival of people with WM is about 78%.

DeNardis, who is very active with the organization, said awareness of WM is growing. The IWMF funds research and has observed a significant increase in the number of scientists and clinicians who are studying WM. One possible reason is the nonprofit’s efforts to engage with the research committee, he said. Another is that people with WM are living longer with the disease so there are more patients available to study longer.

Treatment Options for Waldenstrom Are Evolving

“The good news with Waldenstrom's patients, they can respond to all the lymphoma drugs, and they can respond to all the multiple myeloma drugs,” said Dr. James Berenson, founder of the Institute for Myeloma and Bone Cancer Research in West Hollywood, California, in an interview with Patient Power Co-Founder Andrew Schorr.

“So they have huge numbers of possible therapies today. It's so much different than it was a couple of decades ago, and it's a very chronic disease now.”

Finding a Waldenstrom Specialist

DeNardis said there is a need for an affordable way for patients to consult with doctors at one of the major centers, such as Dana-Farber Cancer Institute in Boston, Weill Cornell in New York City and the Mayo Clinic, which has campuses in Rochester, Minnesota; Scottsdale and Phoenix, Arizona; and Jacksonville, Florida. He was able to find a specialist through the IWMF Connect, the online group discussion forum and his local support group.

Dr. Berenson agrees.

“I think it's imperative really to see a specialist, at least initially, because the average oncologist sees one of these every couple years,” Dr. Berenson said in an interview with Patient Power Co-Founder Esther Schorr at the 2019 ASH annual meeting in Orlando.

“And we see lots of them every week, and so we have the experience. But the Waldenstrom's experts are also pretty good about taking phone calls from local docs, and they're really an open community in that regard in helping them treat the patient.”  

Family Support is key to living with cancer

Advice for Those Newly Diagnosed with Waldenstrom

DeNardis said his diagnosis has changed him, perhaps for the better. He doesn’t worry so much about the “little things.” He tries to make the best of things. He has less frustration when things don’t go his way. He said some people think he’s angry, but it’s simply he has a different perspective on life.

Exercise is therapeutic when living with cancer“I don’t feel like putting up with things that don’t contribute positively to what I’m going through, how I’m living or how I’m working,” he said.

His advice for patients newly diagnosed with WM: Rely on your family and friends (at least the ones that will stick by you) and don’t keep your thoughts and feelings bottled up. Consider joining the IWMF for information, resources and support.

“Eat better and exercise, even if it’s just a walk around the block,” he said. “You have to keep your body moving and have a positive attitude. It’s not going to cure you, but it just makes your quality of life better. And that’s the goal. You want to have a decent quality of life regardless of whether you are in treatment or not.”

To hear more of Peter’s story, watch Waldenstrom Macroglobulinemia Treatments are Giving Patients Hope.

Sign up for Patient Power e-news to get the latest Waldenstrom macroglobulinemia information delivered right to your inbox.

~Megan Trusdell

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