Doctors and Patient Advocates are Working Tirelessly for Waldenstrom Macroglobulinemia

The latest in Waldenstrom macroglobulinemia news comes not only from the hospital clinic, but also from the race track, and the dance floor!
As for the former, latest results are in from a newly completed Phase 3 clinical trial (iNNOVATE) for single-agent ibrutinib in patients with refractory Waldenstrom macroglobulinemia, and they are proving to be extremely promising.

Specifically, it was shown that this drug is both highly active and also has a favorable risk-benefit ratio in patients whom multiple rituximab-based therapies have failed.

In fact, after 18 months of treatment, results showed that a vast majority of 90% of participants had an overall response, and 71% of patients had a response that was characterized by “major.”
Ibrutinib is a chemotherapy-free treatment option for Waldenstrom macroglobulinemia patients, which is of huge need in this community right now.

Currently, this rare type of slow-moving blood cancer is only treated using limited traditional methods, most of which, are severe and difficult to tolerate. To learn more about these current treatment options and Waldenstrom macroglobulinemia in general, click here.

Ibrutinib, on the other hand, is a novel new targeted agent that inhibits Bruton’s tyrosine kinase by targeting the MYD88 gene. This gene is mutated in 90% of Waldenstrom macroglobulinemia cases, so ibrutinib works to treat the underlying biological cause of the cancer, leading to a “new era” of treatment.
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In fact, ibrutinib has since been approved by both the U.S. FDA and the European Medicines Agency for use in relapsed cases of Waldenstrom macroglobulinemia, but next steps for the drug are to evaluate it as a single agent therapy and as a combination therapy in front-line treatment.

In these steps, there are still issues with ibrutinib, such as the drug’s high price, that need to be worked out before any subsequent approvals come in, but even so, the latest results are great news and may even considered “remarkable,” per Dr. Cheson of Georgetown University in his accompanying editorial for the published study. To learn more about ibrutinib in the iNNOVATE study, click here!

But even with these exciting results, we need to remember that not only doctors and scientific researchers via clinical trials can make a difference in the lives of people affected by Waldenstrom macroglobulinemia, family members of patients can, too.

James Hinchcliffe, famous racing car driver, is also doing his part to shed light on Waldenstrom macroglobulinemia and raise money that goes to these clinical trials for research. Specifically, he took part at “The RALLY Toronto” cancer fundraiser Thursday, July 13, where he went on the dance floor (after earning second place in the hit television series, Dancing With The Stars) to raise money that was split between two charities: Waldenstrom’s Macroglobulinemia Foundation of Canada (WMFC) and Racing for Cancer.

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James co-hosted this event with Indianapolis 500 winner and the founder of Racing for Cancer, Ryan Hunter-Reay, but James also has a personal connection with WMFC – his mother is president. He is so active in this community because his father had Waldenstrom macroglobulinemia for 20 years before his passing in 1996.

At this time, doctors did not really know how to properly treat the rare form of cancer, so James’s mother, Arlene, made it a promise to be relentless in raising awareness and research funds. Because there wasn’t a support group around the time that Arlene lost her father, and James, his grandfather, creating one became “goal number one.

Since then, Arlene, with the help of James, has led the WMFC into a full-fledged charity in Canada, all without any government funding or support. To learn more about the WMFC, click here, and to learn more about James’ fundraising efforts for this charity, click here!

The Hinchcliffe family is truly an inspiration for other families that have lost a loved one to cancer, and Arlene and James’s determination and optimism is helping push along research and advocacy for everyone in the Waldenstrom macroglobulinemia community, whether from the race track, or from the dance floor.
Source: Giphy
Make sure you stay tuned on Patient Worthy for the latest updates on Waldenstrom macroglobulinemia and other rare diseases!

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