The Legacy of the Tarceva Diva

About three years ago, a new member of our Lung Cancer Survivors Support Community posted a message: she was taking Tarceva and wanted to discuss with fellow members everything about that cancer drug.

She titled her post, TARCEVA DIVAS AND DUDES DISCUSSION & SUPPORT. She saw a need to create a community within a community, and beginning with that modest post, she did it. She didn’t ask permission. She didn’t wait for us, or another member, to organize and lead a top-down discussion about Tarceva.

The ongoing discussion string became the place for our members to go to talk about Tarceva and next-generation lung cancer treatments.

The member became known by some as the Tarceva Diva, and for the purposes of this story, that’s what I’ll call her. This story is not specifically about Tarceva, or even about lung cancer, but instead, it’s a celebration of  an unsung hero who helped thousands of people.

There have been well over 8,000 posts in less than three years’ time–about 250 posts per month–in just that series of hundreds of “Divas and Dudes” discussion strings. That’s a constant, dedicated stream of treatment insights from-the-front-lines of people worldwide affected directly by lung cancer.

“WELCOME TO TARCEVALAND!!!” she’d proclaim to a new member, or “newbie.” She could insert humor into the discussions without making light of the seriousness of members’ illnesses. The activity in the Tarceva sub-community grew so quickly that the Tarceva Diva created another discussion topic, TARCEVA SIDE EFFECT BUSTERS, which created yet another resource for members.

In the summer, the Diva would start discussion strings with, “Join me for lemonade and sangria on my deck. We will enjoy the sounds of the sea.” And in the winter, she’d beckon fellow members with, “Come on in for a cozy fireside chat.”

She used positive visualization effectively, with humor, warmth and whimsy. One time she urged a new member, “Remember you have many Diva sisters here. We find solutions!!!”

And all the while, longtime survivors and “newbies” interacted, sharing a myriad of information about managing lung cancer treatments. The reservoir of insights grew enormously, guided gently by the hand of the Diva.

But in late 2013, after a period of decline, the Tarceva Diva passed away. Her online network–her virtual family–mourned. “I have had many up and down battles, and all of the info you posted for us was a godsend to me,” one member wrote in public tribute to the Diva. “I marveled at your good humor and caring sentiments.”

“You’ve made this corner of the world a shelter for those who suffer,” said another member.

And after the Diva’s death, one member summed up her contributions to a virtual community of people connected by cancer: “What a meaningful life she led and what a legacy of compassion, humor and love she leaves behind.”

After a family member confirmed to the online group that the Diva had died, tributes from members poured in, but their discussion string series itself stalled. Then, on her own, another member stepped forward. She volunteered to continue the series of “Tarceva Divas and Dudes” discussions, and even start a new regular discussion string for members on the drug Afatinib. She is the new Tarceva Diva.

Brian Loew is co-founder and CEO of Inspire.