Viral social media post helps Otsego woman get clinical trial

Posted at 10:50 PM, Jan 12, 2017
and last updated 2017-01-12 22:52:46-05

BRIGHTON, Mich. -- Lorie Volker said she lives life like everyday is her last, including enjoying the outdoors and traveling the world.

That was well before she was diagnosed with Stage IV sarcoma, a painful, debilitating cancer, in March 2016.

"It basically spread all over many different areas, throughout my legs, hips, chest, back,­" Volker explained. "Ultimately, it spread to the heart."

Volker, who grew up in Otsego, now lives in Brighton with her mom as she battles the disease. After various types of chemotherapy treatments, she said her oncologist told her there wasn't much more that could be done, except to try one more alternative.

"I said, 'I want to try everything I can,'" Volker recalled.

She learned about an immunotherapy drug called Keytruda, but it was a clinical trial that her insurance doesn't cover. Volker would have to apply for the coverage three times and be rejected three times in order to potentially qualify as a compassion case, and that takes time.

"When my family and friends heard that, they said, 'No way, Lorie might not even have three months here; let's see what we can do. Let's put together some kind of grassroots effort. Let's do whatever we can,'" Volker recalled.

Her longtime friend, Oney Syers, made a video and shared it online. He pleaded for people to bring Volker's case to the attention of Merck, the pharmaceutical company Merck that administers the immunotherapy drug.

The video went viral.

"I actually got a phone call from one of the VPs at Merck on New Year's Day," said Volker. She was told the company wanted to help her, wanted to reach her oncololgist and dot it as quickly as possible. "And they moved mountains," she said.

Volker is thankful for her oncologist, Dr. Rashmi Chugh at the University of Michigan Health System, for working with Merck on getting her treatments started quickly.

Volker started her Keytruda treatments on January 6.

Volker says her treatment will take place every three weeks for about an hour, as opposed to every day for hours at a time.

Treatment with Keytruda can cost $12,500 per patient per month. A GoFundMe page has been set up to help Volker.

She said she wants other people to know that this treatment is out there and that it provides an alternative to chemotherapy.

Volker pointed to her family and friends as an amazing support system. Her 7-year-old son called 911 when she first collapsed, and the cancer was subsequently discovered. Her partner John has been by her side for thee many hours of chemotherapy. Volker also said her mother quit her job to take care of her, and her sister visits her every weekend from West Michigan.

A friend also came up with the #HoneyBadgerChallenge in her honor. With the challenge, people are to do a random acts of kindness and share what they've done on social media. Volker will be able to see what people doing good things in the world as a result of the challenge.