Published on September 4, 2020
Waldenstrom Patients and Experts Connect Online
“I can see a world without WM, and it’s a marvelous place,” said IWMF Chairman of the Board Carl Harrington. “If we all work together, we can get there.”
On August 27 and 28, the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) hosted its 25th annual Educational Forum. For the first time ever, the event was held entirely online.
When the coronavirus pandemic disrupted their original plans — an in-person Ed Forum scheduled for June 5-7 in Renton, Washington — the IWMF planning committee didn’t let that stop them.
In mere months, they organized an impressive online Ed Forum that included a virtual auditorium, exhibit hall, patient resources and more. They even held a virtual Walk for Waldenstrom’s that has raised $56,002 and counting.
More than 1,300 Waldenstrom macroglobulinemia (WM) patients and community members from 31 countries participated in this year’s event.
2020 Vision: A World Without WM
Carl opened the Ed Forum with a video of Barbra Streisand singing “On a Clear Day (You Can See Forever),” which introduced this year’s event theme — ‘2020 Vision: A World Without WM.’ Carl then highlighted some of the progress being made toward achieving that vision.
- The life expectancy of someone diagnosed with Waldenstrom macroglobulinemia has increased from 3-5 years from the time of diagnosis to 16-20 years.
- In 1994, there were four treatments for WM, all with serious side effects. Now, there are at least 41, including ibrutinib (Imbruvica), the first drug approved by the FDA for treating WM.
- Today’s therapies have fewer side effects and lead to deeper, longer remissions, improving patient quality of life.
- Research and clinical trials are leading to promising new treatments, including venetoclax (Venclexta), zanubrutinib (Brukinsa), and acalabrutinib (Calquence).
- Since 1999, the IWMF has funded more than $18 million in research and 50 specific projects. “We have the best researchers in the world working on WM,” Carl said. “The sun never sets on WM research.”
Life Expectancy for Waldenstrom
Carl also shared the progress he has seen in survival rates since his own Waldenstrom diagnosis 14 years ago.
“When I was first diagnosed with WM in 2006…I was very, very, very worried about my future,”
Carl said. “At the time, the survival rate was 3 to 5 years. I was 56. I wondered if I’d see our son who was in college graduate. I wondered if I would see him get married and have kids. Like many of you, I imagined my tombstone. It would have the years 1950-2010 on it.”
Carl paused and then continued.
“I don’t have that tombstone. Now I’m hearing Dr. Treon talking about 16 to 20 years from date of diagnosis... 16 to 20 years.”
Waldenstrom Experts Have Hope for the Future
Renowned Waldenstrom experts Dr. Jorge Castillo, Dr. Steven Treon, and Dr. Stephen Ansell each presented individually during the event and then teamed up for a live 90-minute “Ask the Doctors” session at the end. The underlying theme throughout was hope.
“We have been in multiple meetings with patients in which we say, ‘Whoever has been alive with Waldenstrom's for the last 15 years, stand up.’ And we have a lot of people stand up. ‘20 years?’ And a lot of people stand up,” Dr. Castillo told Patient Power.
“I think we are going to be seeing more of that…even longer survivals, even better quality of life moving forward. And I think that is a very encouraging aspect of things when we think about it.”
Dr. Treon and Dr. Ansell echoed those thoughts.
“These new drugs have changed things,” Dr. Treon explained. “We're still innovating. We have a lot of remarkable new drugs that we're working on… The future is bright. We're going to make this a chronic ailment and hopefully cure it soon…sooner rather than later.”
“We haven't got to the cure yet,” said Dr. Ansell, “but if you look at the trajectory one's pretty optimistic that you're going to see in the next five to ten years potential cures for this disease.”
To learn more about specific Waldenstrom treatment advances and therapies, watch Patient Power’s interviews with these three leading experts.
- Current and Future Treatments for Waldenstrom Macroglobulinemia
Jorge J. Castillo, MD. Associate Professor at Harvard Medical School and Clinical Director of the Bing Center for Waldenstrom Macroglobulinemia at Dana-Farber Cancer Institute.
- How Are BTK Inhibitors Changing Waldenstrom Patients' Outcomes?
Steven Treon, MD, PhD. Director of the Bing Center for Waldenstrom’s Macroglobulinemia at Dana-Farber Cancer Institute, a Professor of Medicine at Harvard Medical School, and Chair of the WM Clinical Trials Group.
- Will There Be a Cure For Waldenstrom Macroglobulinemia?
Stephen M. Ansell, MD, PhD. Professor of Medicine, Consultant in the Division of Hematology, Department of Internal Medicine at Mayo Clinic in Minnesota. Chair of the Mayo Clinic Lymphoma Disease-Oriented Group.
Waldenstrom Support Groups
IWMF Vice Chair of Member Services and support group leader Lisa Wise spoke to Patient Power shortly after the Ed Forum wrapped up on day two.
“I remember the first time I was at an Ed Forum in Dallas,” Lisa said. “I sat next to someone who had been diagnosed over 20 years earlier. It was the first time I asked a stranger for a hug…because I felt like I needed to just get that hope.”
While Lisa wasn’t able to hug her WM community in person this year, she still felt the love.
“I really feel today like I just had a virtual hug from WMers around the world. And I hope that everybody who enjoys the virtual Ed Forum will feel the same way.”
If you missed this year’s event (and your virtual hug!), visit the 2020 IWMF Virtual Educational Forum to access on-demand videos, slides and other resources.
Looking for more Waldenstrom macroglobulinemia information? Sign up for Waldenstrom e-newsletters and we’ll send the latest in cancer care right to your inbox.
Recommended for You:
- What Is Waldenstrom Macroglobulinemia?
- Waldenstrom Macroglobulinemia Treatments are Giving Patients Hope
- Watch and Wait for Waldenstrom Macroglobulinemia