Clinical Trials Can Help Those with ALK Lung Cancer Get State of the Art Treatment
Linnea (center) and her longtime oncologist, the wonderful, Dr. Alice Shaw on the left.
In this newsletter, we pay tribute to Linnea Olson, a 17-year ALK-positive lung cancer survivor. We lost her in November of 2021, but her legacy as a creative, kind, and impactful lung cancer advocate will always inspire our group.
Linnea, along with many other long-term ALK-positive lung cancer survivors, participated in clinical trials at several junctures in treatment. Linnea participated in a trial of Crizotinib, the first treatment for ALK-positive lung cancer. She joined 5 more clinical trials over the course of her illness. By enrolling in clinical trials, she was able to get advanced treatments before they were approved for general medical use.
Linnea spoke freely and openly of the pros and cons of being a clinical trial participant, and she was a fierce advocate for the patient voice in designing and administrating clinical trials. The ALK Positive Clinical Trials Committee will honor her by continuing to work on behalf of trial participants. We will continue to advocate for safe and accessible trial design, reimbursement for travel and other expenses, reasonable lab and scanning protocols, and free access to experimental treatments as long as they are effective. We will “shout from the rooftops” that patients need to be true partners in the clinical trial process.
One of the most important missed opportunities for clinical trials are for those recently diagnosed or early in treatment. Some with ALK-positive lung cancer only look for clinical trials when they have run out of treatment options. Right now, there are 15 studies worldwide that are recruiting for those who have just been diagnosed with ALK-positive lung cancer. There are many more trials that are testing second and third-line treatments. By enrolling in a trial at the early stages of treatment, you have an opportunity to get the most advanced treatment and delay progression. These trials may help you thrive longer with ALK-positive lung cancer.
Hear Linnea talk about clinical trials: https://www.youtube.com/watch?v=43FR4p7wYxY
Below is a compilation of resources that will help ALK-positive patients and their care teams identify suitable clinical trials that are open to them.
ALK LUNG CANCER CLINICAL TRIAL HELP AND SEARCHING:
ALK Positive on ClinWiki * - search for clinical trials by location and/or stage in treatment
ALK Positive Support Group Clinical Trials Spreadsheet*
GO2 Foundation for Lung Cancer - LUNGMATCH
LUNGevity Online Clinical Trial Finder:
CenterWatch Clinical Trials Search
MassiveBio Clinical Trials Search
General Info about ALK NSCLC Clinical Trials
As of December 2021, there are at least 50 clinical trials that are recruiting specifically for people with ALK-positive lung cancer. Many of these trials have multiple sites worldwide. Since ALK-positive lung cancer is a rare disease, it is difficult for any one oncologist to be aware of all the trials available. You can advocate for yourself and find a clinical trial that may be a good fit for you at any juncture in treatment.
*ClinWiki and ALK Positive Clinical Trials Spreadsheet were developed by the ALK Positive Medical Committee in partnership with ClinWiki. These databases are updated monthly. Disclaimer: these trials have been consolidated by volunteers and should not be considered exhaustive. Listing of these trials is not an endorsement, and ALK Positive does not recommend one trial over another. Please talk with your doctor about these or any other trials you are interested in.
Author: Ellee Urban