#CureChat: A Conversation About Surviving Advanced Lung Cancer With Linnea Olson

It is such a privilege to get to know extraordinary cancer advocates through our monthly #CureChat Twitter chats. Linnea Olson—who told us in this interview, “I wouldn’t be alive without clinical trials”—is definitely one of them.

Scan of Linnea Olson’s lungs.

Known on Twitter as @1111linno, Linnea joins us on this month’s #CureChat to share her incredible story of surviving advanced lung cancer, as well as her perspective on clinical trials (she is currently in her third clinical trial), the roles patients can play in clinical research, and her evolution from patient to advocate to activist. We’ll also delve into the helpful traits and qualities cancer patients can draw on to cope with cancer.

Linnea was first diagnosed with early stage Lung Cancer in 2005, and in 2008, after a biopsy, was reclassified as Stage IV and given a prognosis of 3 to 5 months. She also learned she had tested positive for the ALK Mutation.

As she told the Massachusetts General Hospital Story Project:

“(…) in 2008, I had run out of treatment options and basically had a talk with my oncologist and I asked ‘how much time do I have left?’ and he said 3 to 5 months. Then, I had a biopsy that was submitted for genetic testing and I was found to have the ALK mutation and they had a clinical trial here that targeted it. I became the fourth person in the world with non-small cell lung cancer to try this particular experimental therapy. It worked. Now I’m on my third phase clinical trial.”

Linnea shared how she made the decision to join that groundbreaking trial. Her doctor presented her with four options:

  1. Stay on existing treatment
  2. Go back on chemo
  3. Do nothing
  4. Try this Phase 1 Clinical Trial that targets the ALK Mutation

Without knowing anything else, she said YES to the trial right then and there. Her rationale was simple: “the other three options will result in certain death, and the trial presents a tiny sliver of hope.” Her expectation for the trial was that her life could maybe be extended by a few months. Linnea realized she feels fortunate that she is not a very risk-averse person, and can sit well with uncertainty.

This is a message she has shared in her journey from advocacy to activism, along with great information. Linnea told us how she was moved to become an advocate:

“I feel that those who can should. I felt a need and felt gratified that I had the opportunity to try to make this unfair disease a little more equitable by sharing information. I wanted to be a resource.”

For more information about Linnea, please see this page on her blog.

Chat topics:

T1. Linnea’s story. In the first part of the chat, we’ll yield the floor to Linnea who will tell us about surviving advanced lung cancer 140 characters at a time. Then we’ll move on to the discussion to explore the following topics:

T2. How have clinical trials changed over the past 10 yrs?

T3 . What roles can patients play in clinical trials?

T4. What’s the difference between patient advocacy and patient activism?

T5. What are some helpful qualities or traits cancer patients can draw on?

 

Please join us for our next #CureChat, Thursday, March 9th, 2017 at 1 PM Eastern!

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