ALK Clinical Trials, March 2022, and Upcoming Emotional Support Study at Massachusetts General Hospital
A Study to Address the Emotional Pitfalls of ALK-Positive Lung Cancer
On the ALK Positive Support Group pages, I see photos of smiling, loving families having incredible adventures while living with an unpredictable and unrelenting illness. Our family has taken the same snapshots with my husband smiling in the center, his face showing no signs of stage 4 lung cancer. These pictures show the tremendous well of love and resilience we all tap into every day. But on some days, I look at these families and see my own weaknesses. The others seem to be managing this illness so well, so positively, while I wrestle with an obscured future. In these bad moments I can slip into despair. Even on these days I know our support group has room for the sadness alongside the celebration. Living with ALK-positive lung cancer can be heart-rending. Compassion holds us together, both personally and universally.
Although emotional distress is a common psychological "companion" of lung cancer, it is often not addressed at medical appointments. A new study at Massachusetts General intends to “develop a supportive care model for patients with metastatic lung cancer to learn to cope with uncertainty and understand their prognosis and the goal of therapy, in order to live well with cancer.” Each participant will have four 60-minute visits with a palliative care physician who has been additionally trained to evaluate the psychosocial issues and health-promoting behaviors of people with lung cancer harboring targetable mutations. Enrollees will be assessed for uncertainty tolerance, psychological distress, goals and values, self-efficacy, and distress related to diagnostic uncertainty for 6 months. The study will test a treatment model designed to help patients with “long, uncertain cancer trajectories”. According to ClinicalTrials.gov, the study is not yet recruiting. For more information on this study, click here: Patient-centered, Optimal Integration of Survivorship and Palliative Care
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 Support Group Clinical Trials Spreadsheet*
GO2 Foundation for Lung Cancer - LUNGMATCH
LUNGevity Online Clinical Trial Finder
NOTE: ClinWiki cannot be updated at this time due to software problems; therefore it should not be used until further notice.
General Information about ALK NSCLC Clinical Trials
As of March 2022, 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.
The ALK Positive Clinical Trials Spreadsheet was developed by the ALK Positive Medical Committee. This database is 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 trials you are interested in.
Author: Ellee Urban