Updated: Feb 15
November is Lung Cancer Awareness Month. Today we’re sharing the story of a ROS1+ lung cancer patient and how she’s benefitted from research.
This article first appeared in the Fall 2021 ROS1derings (newsletter of The ROS1ders).
I have been living with ROS1-positive lung cancer for nearly three years. I am doing well thanks to research and clinical trials. I’ve taken drugs that were initially introduced through clinical trials, and I’ve participated in one. They are life savers.
Here’s my story:
I was diagnosed with stage IV non-small cell lung cancer on January 10, 2019. My oncologist at Texas Oncology put me on an immediate regimen of chemotherapy (carboplatin and Alimta) while doing biomarker testing in the background. I was lucky that I have an oncologist who is familiar with the latest research regarding gene mutations and rearrangements and the need for biomarker testing. During this time, I was also given Keytruda immunotherapy, but since then, studies have shown immunotherapy is not always effective for ROS1 cancer.
I responded well to chemotherapy, so we stayed with that treatment for as long as it was effective (for one year). Then, biomarker testing showed I was ROS1 positive. So, when chemo was no longer effective, we changed my treatment to Crizontinib on February 1, 2020.
Crizontinib worked very well for me for over a year. The drug completed clinical trials and is now widely available. I have benefited from all of those patients who took the drug as it was being tested. I am grateful for those people and have been honored to meet some of them through the “ROS1 Positive (ROS1+) Cancer” Facebook group.
After being on Crizontinib for over a year, I noticed some lymph nodes were swollen around my jaw area in March of 2021. I advocated for rescheduling my usual scans, which confirmed progression in the lymph nodes. A biopsy confirmed that it was still ROS1 positive.
My oncologist said he could put me on lorlatinib as a next step, or I could join the repotrectinib trial at the University of Texas Southwestern Medical Center (UTSW). We decided I should join the repotrectinib trial, because if it didn’t work, I could then try lorlatinib (if appropriate). But, if I went on lorlatinib first and it didn’t work, I wouldn’t be able to get into the repotrectinib trial.
The Clinical Trial and the Washout Period
The research team at UTSW did a wonderful job getting me into the clinical trial and monitoring me closely during the trial. Before I started on repotrectinib, I had to go through a washout period where I had to stop taking crizontinib for at least seven days. Members of the Facebook group reported they had experienced issues when the washout period was extended to over two weeks. Since I learned from that, I advocated with my research team to keep my washout period to within 10 days.
At my checkpoint appointment after being on the drug for four weeks, the research doctor asked me how I felt. I explained that I felt like my lymph nodes were more swollen, so he recommended that we move up my scheduled CT scan. Based on how I was feeling, I asked if we could do it soon and we did. The results showed that my lymph nodes were getting larger, so, we stopped the drug immediately.
Still Appreciating the Trial
Repotrectinib didn’t work for me, but I’m glad that I tried it and I hope that the research team can learn from my case. And I was grateful to build new relationships with the impressive team at UTSW.
When a drug doesn’t work, it is important to reach out to your doctor and experts regarding next steps. Both my primary oncologist and the research doctor recommended that I try something new right away, so I started Docetaxel chemotherapy. I have gone through one round of chemo and the lymph nodes in my neck have shrunk significantly. My oncologist was pleased that I’ve had virtually no side effects except for the normal hair loss and fatigue a few days after chemo.
In addition, my primary oncologist and I have sought input from Dr. Ross Camidge, a ROS1 expert. He looked at my records and explained that the reason my cancer was progressing was not because I had developed a resistance to repotrectinib; instead, my cancer had acquired a second driver (a RET gene fusion). He recommended I stay on docetaxel chemotherapy as long as it is effective and tolerablet. One of the next options may be to go back to Crizotinib and add a RET inhibitor.
I hope my story illustrates how valuable it is to talk to a ROS1 expert and get a detailed diagnosis and recommendations for treatments. I’m thankful that there are several existing options and there are also new promising drugs in clinical trials.
Sharing Lessons from the Journey
The most important things I’ve learned through my journey so far are:
Seek doctors who are knowledgeable about the latest research for your type of cancer.
Seek doctors who are willing to collaborate with other research doctors and experts.
Join a group like the “ROS1 Positive (ROS1+) Cancer” Facebook group to learn from other patients and gather ideas about questions to ask your doctor.
Focus on the present moment and try not to worry too much about the future. Focus on activities that bring you joy as you are going through treatment.
If you’ve found Carol’s story interesting, please considering donating to The ROS1ders nonprofit to help fund research into ROS1+ cancers.