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Shelly’s Story

As a music teacher and a mother of 2, Shelly E. was busy balancing life and work. When she experienced shortness of breath going room to room at her music school she never thought much about it.  Then someone else noticed and suggested she see a doctor. That was 2013.

Shelly’s doctor diagnosed her with pneumonia and gave her medication. Not only did the medication not work, Shelly says she felt significantly worse in the days that followed.  When she went to get a second opinion, little did she know, she was about to hear the news she never expected: “It was stage 4 lung cancer. I had no other symptoms, I’m not a smoker. I was devastated.”

Shelly quickly started standard care: “the same chemo they’ve given over the last 30 years,” she said, “and it didn’t work for me. I failed all options. My doctor told me to get my affairs in order.” Shelly’s lung cancer had metastasized, moving to her brain, and she didn’t just have one tumor, it was several tumors; too many to count, and they were spreading.

Her kids were 10 and 7 at the time. Shelly wasn’t going down without a fight. She got multiple opinions, did extensive research and eventually came across a final shot at hope: a clinical trial. It was a last ditch effort to live.  

The first clinical trial at the Mayo clinic wasn’t the savior she hoped it would be. But then she found out about another clinical trial, this one at Massachusetts General Hospital, testing the drug Lorlatnib on brain tumors. Shelly started on the trial on July 17, 2016 when doctors told her this was her only option for survival.  

However, there was one big problem: traveling from her home in Minnesota to Boston every two weeks was adding up and Shelly realized the travel costs would bury her family in debt and drive them into bankruptcy.  When a counselor at MGH suggested Lazarex Cancer Foundation, she immediately applied for assistance. “I then got the call that saved my life,” Shelly remembers, “Lazarex started reimbursing me for my flights, cab fares and hotel, and they paid for my husband to travel with me which was important because I wasn’t feeling well.”  

After a few months on the trial, the Lorlatnib cleared up every tumor except one, and even that tumor is now stable. Shelly said, “I could not have done this without Lazarex. We prayed heavily ….and figured we’ll do this until we can’t. We thought about selling off things we owned, even dipping into college and retirement.  But thanks to Lazarex, we now don’t have to do that. “

Lorlatnib is now FDA  approved for lung cancer patients, but the arm of the trial Shelly is on  investigates the drug’s efficacy on brain tumors. Shelly says she’s feeling well and will stay in the trial until her body can no longer handle the side effects or if more brain tumors are discovered.  In the meantime, she is grateful for the clinical trial that provided a lifeline when all hope was lost, and for the generosity of Lazarex, which has allowed her the opportunity to choose hope.