Update on ALK Clinical Trials Currently Recruiting and a Caregiver’s Perspective on why Treatment at an NCI Cancer Center Prolongs Survival
Like all trips to the emergency room, this one was unexpected. But my husband was shocked and overwhelmed to hear he had stage 4 lung cancer. With tumors throughout his chest and in his brain, his prognosis seemed dismal. The oncologist assigned by the hospital did not ease our panic. His bedside manner was characterized by profound sadness, with a whiff of boredom. He gave the breezy impression that these five-alarm cancer fires burned all the time, and treatment was not urgent.
My suddenly ill husband was referred to the local community cancer center, but I had reservations. Could this small clinic, less than a mile from our house, give him the most advanced treatment? On the other hand, with his disease so advanced, would it make any difference where he was treated?
As we waited for biopsy results, I consulted Dr. Google. As a healthy, never-smoking man in his early fifties, he was likely to have a biomarker mutation that would enable him to be successfully treated with a targeted therapy pill. Google told me my husband's expected survival was much longer than the 8-12 months we had understood. I remember gushing to a friend he could survive more than 3 years, as if nothing could be more joyful.
The next four weeks were spent stabilizing my husband medically to prepare for cancer treatment. I fought several forces that seemed designed to sabotage his care. I navigated insurance denials, unanswered calls from his providers, and a lack of available appointments. The most disheartening event was the failure of the hospital to send his biopsy sample for biomarker testing. I discovered this error when I called the lab two weeks after his biopsy to see if the biomarker results were available. I was horrified to learn the lab had yet to receive the sample.
It became clear our local cancer center was not an option, regardless of prognosis. I was exhausted from battling for my husband’s care. I called our state's university cancer center, about an hour drive from our home. It was as if I had called 911. The scheduler who answered the phone seemed highly interested in my husband’s case, far more so than his current doctor. She got an oncology fellow on the phone and he kindly answered all my questions. He recommended my husband see their expert on non-smoking lung cancer.
We found that there was an ALK-positive biomarker mutation a few days before the appointment at the university cancer center. There was a team at that first appointment, all crowded into the tiny exam room. The thoracic oncologist, fellow, and resident were soon joined by a clinical trial coordinator. They were all enthusiastic, and the room was pulsing with hope. There was suddenly a sense of interest and urgency from someone else besides us.
Our university cancer center is a National Cancer Institute-designated Cancer Center, one of 64 highest-rated cancer centers in the United States. Multiple studies have shown that those treated at NCI cancer centers survive longer than those seen at community cancer centers, regardless of type of cancer or stage. Although cause and effect are not established, there are several reasons why NCI Cancer Centers may keep people alive longer. Importantly, they are more likely to enroll patients in clinical trials, which can offer state-of-the-art treatment. Their clinicians are more likely to follow current treatment guidelines and expert recommendations. Clinical decisions tend to be multi-disciplinary, with several clinicians consulting on one case. Treatment is performed with a higher level of surgical, procedural, and laboratory expertise. Lastly, treating a high volume of similar patients may be an important contributor to longer survival.
For those who cannot get regular care from an NCI Cancer Center, many offer consultations and give advice to local oncologists. Clinical trials can be found at multiple sites, even at smaller community cancer centers. It is impossible for a general community oncologist to keep up with all clinical trials for every type and stage of cancer. Consulting with an NCI-Designated Cancer Center can help find clinical trials for all stages of treatment.
Click on the map to find an NCI-Designated Cancer Center in the United States
Seven days after his first appointment at the university NCI-Designated Cancer Center, my husband was started on an experimental ALK inhibitor (Brigatinib) as part of a clinical trial. Four and a half years later he remains on this now FDA-approved oral medication, with no spread of the lung cancer. He is not cured, but the cancer has been stopped in its tracks. The university oncology team remains as hopeful as ever, and they continue to respond to his needs promptly and consistently without fail. Our family is battered a bit but still whole, thanks to those who practice at the top of their field.
References:
Impact of care at comprehensive cancer centers on outcome: Results from a population‐based study
Patients treated at cancer centers live longer: study
Clinical trials play an important role in the long-term survival of many lung cancer patients. 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.
COVID-19 & CLINICAL TRIALS
Despite the pandemic, several new trials for ALK lung cancer are recruiting for patients. Because of Covid-19, the trial teams are finding safe ways to treat participants (telemedicine, mailing meds to home, etc).
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
CenterWatch Clinical Trials Search
MassiveBio Clinical Trials Search
General Info about ALK NSCLC Clinical Trials
As of March 2021, there are at least 43 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.
*Spreadsheet developed by ALK Positive Volunteer Ellee Urban and ALK Positive Medical Committee in August 2018. Updated monthly and posted in the ALK Positive Support Group.
Disclaimer: these trials have been consolidated by a volunteer 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