Home » Advocacy » Why I’m in a Clinical Trial

Why I’m in a Clinical Trial

The fact that I’m alive is a modern-day medical miracle. And I owe it to clinical trials.

In early 2011, I was in good physical shape, slightly overweight, eating healthy and exercising regularly. After I tolerated a nagging, slight cough for a few months without any relief from antibiotics, my doctor ordered a chest x-ray. Before I’d left the lab, she ordered a CT scan. Before I arrived home from the clinic, she called: the radiologist saw a mass in my lung. Two days later, a Friday, I saw a pulmonologist who performed a biopsy. He called me Tuesday evening, May 10, 2011, with the news: at age 55, as a never smoker, I had lung cancer.

Scans and tests over two weeks rendered a diagnosis of stage IIIA non-small-cell adenocarcinoma complicated by obstructive pneumonia. I was not a candidate for surgery, but the oncologist considered me curable. My tumor didn’t have either the EGFR or ALK mutations.  After ten days in the hospital and weeks of IV antibiotics, I recovered enough to get radiation therapy and low-dose chemotherapy, followed by one full dose of chemo (my side effects were too severe to allow me to have more chemo). I finished first-line treatment in early August 2011.

My post-treatment CT scan in late September 2011 showed the lymph nodes were almost completely clean, and the tumor had shrunk by over 90%. I thought I had a great chance at a cure. In the next two weeks, I underwent several tests to determine if I was healthy enough to have the lung removed. One of the tests was a PET scan, which found a hot spot on my right front collarbone. A few days, later two lymph nodes were removed in an open biopsy and found to be more of the same cancer. I was now stage IV–metastatic lung cancer. No lung surgery for me. The radiation oncologist advised waiting rather than radiating because I’d had a large volume of lung zapped already.  My oncologist also advised waiting a few months before starting a new chemo to give my body time to recover.

I decided to learn more about treatment options during those few months. From my participation in the Inspire.com Lung Cancer Support Community, I’d learned about the Lung Cancer Mutation Consortium Protocol clinical trial, which tested for ten mutations in lung cancer tumors. I had lots of slides courtesy of my two new tumors; testing for more mutations sounded hopeful, and I liked the idea of contributing in some small way to the science looking for a lung cancer cure. I searched for the trial on clinicaltrials.gov and emailed its contact person at the University of Colorado in Denver. I couldn’t travel to Denver (my pulmonologist thought my hollow tumor might cause a collapsed lung if I flew), but UC accepted me into the trial and tested my tissue anyway.  A few weeks later I received a call from the head of the trial, Dr. Paul Bunn: I had none of the ten mutations.

In two months, a visible 3-inch tumor grew by my right collarbone in the area where the lymph nodes had been removed. I had a CT scan the day after Christmas, met with my oncologist to discuss treatment, and had a power port installed. After six rounds of chemo over five months, CT and brain MRI scans showed all my original tumors were gone, no new tumors had appeared, and the collarbone tumor had shrunk over 90%. We decided to go for a possible cure with more radiation.  Six weeks later, my Sep 2012 PET-CT scan showed the original tumors were gone and the collarbone tumor was dead. However, I had two new nodules suspicious for cancer, this time in my right lung. Twice now I’d recurred within two months after finishing treatment. What to do next?

Someone on the Inspire.com forum suggested that because I was a young, healthy, never smoker with adenocarcinoma, I fit the profile of patients who had new mutation called ROS1. The poster was in a ROS1 clinical trial in Boston, but the trial was also at University of Colorado. I asked my oncologist about ROS1 testing, but he hadn’t heard of it (the research had been published just nine months earlier). While visiting family in Denver, I arranged to meet with Dr. Bunn and learned UC now tested for new mutations, including ROS1 and RET, and that my tumor had a 10-20% chance of having one of them.  I agreed to let UC test my remaining slides.

I had a biopsy a week later. The pulmonologist said he got a good sampling of the larger nodule but couldn’t find any cancer cells. We decided to wait a month and do another CT scan to see if either nodule grew. The very next day, an email from Dr. Bunn told me I tested positive for ROS1. UC had an opening in a clinical trial that involved a pill called Xalkori, which targeted cells having the ROS1 mutation.  Since I didn’t have a biopsy confirming cancer, Dr. Bunn offered to hold a trial slot for me pending results of my next scan.

My October 2012 chest CT showed the smaller nodule grew nearly 50% in one month. I called UC the next morning and started the process to apply for the ROS1 clinical trial. They agreed to consider me without a biopsy. I scrambled to collect all my medical files and scan CDs. Five days later I flew to Denver for two weeks, hoping I’d pass the screening and be accepted into the trial. I took my first Xalkori pill November 5, 2012.

For the next sixty days, I flew to Denver every two weeks, departing Seattle on Monday and returning home Wednesday. I had blood and urine tests every visit, along with other tests (like EKGs and eye exams), and a clinic visit at whichI met with the doctor to review test results and discuss symptoms. I then flew home with two weeks worth of pills. The first PET-CT scan on New Years Eve showed my two lung nodules were gone and no new hot spots—my first clean scan in 20 months of lung cancer. The side effects I experienced were far easier than either chemo had been. I had my life back.

After the first scan, my visits to UC shifted to every four weeks; after ten drug cycles, they shifted to every eight weeks. Now at UC visits I have blood work, a PET-CT scan, a visit with my UC oncologist Dr. Ross Camidge, and a brain MRI every six months. I have blood work done at my home clinic in off months.

I am not cured–the Xalkori only suppresses my cancer. However, Dr. Camidge has a plan for treating my recurrences.  It’s an odd existence, living from scan to scan. I’ll be in treatment for the rest of my days. Yet I’m hopeful that if/when each clinical trial stops working, a better one will be waiting for me.  Maybe they’ll find a cure for me before I die.

And in the meantime, I’m living.

27 thoughts on “Why I’m in a Clinical Trial

  1. I love this for so many reasons: for your determination, for your cleans scans, for the education Inspire.com provides, for ROS1, for clinical trials, for the hope in scientific discovery, and for what I have learned from people like you.

    To many clean scans for ALL of us!



  2. Great news that scans are holding clear, and thanks for your continuing frank discussion of your experience. Great that there are options now and ways to communicate that enabled you to make connections beyond your immediate area.


  3. Janet, your story is both terrifying and inspirational. Thank you for sharing. Thank you for your constant efforts to de-stigmatize lung cancer. Thank you for helping to unite the disparate cancer communities so that we can be stronger as one united voice to eradicate & ultimately prevent all cancers!



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  6. Thanks Squanch sharing your history. You inspire me with your knowledge and determination and give me hope for the future. It is people like you and Linnea who are blazing the trails and trials for us to follow. Lead on. And thank you.


    • Jessica, I intend to squeeze every last second out of Xalkori that I possibly can. Good luck with your treatments as well.


  7. Hi Janet,
    I have had many mixed feelings about the possibility of going into a clinical trial, after my next scan coming up in november. I have been on taxotere since last nov 2012, on a 2 treatment “vacation” this summer with some new progression, then back for 4 rounds. One of my concerns is what phase the trial is in, and there is not a possibility of a placebo. I love my Dr. and the fact that probably I will have to deal with a new Dr. and medical team. It sounds like you have put yourself through a lot but has paid off for you in a wonderful way. Your story has inspired me to at least rethink my concerns about clinical trials.
    The continued success to you, r


    • Hi Margie,
      I’m also the type to do a lot of homework on trial I’m considering. I was hesitant to join a Phase I trial–I’d rather join a Phase II trial with Phase I data available, or a Phase III trial where I knew I’d get a helpful treatment even if I was in the control group. However, my Phase I trial is not typical: instead of a safety or dose escalation trial, it’s a trial with an known dose of a drug approved by the FDA (albeit for a different mutation than mine), and it had published results with a small group of ROS1 patients that looked phenomenally promising with much better results than chemo.


      • Janet,
        Thanks for your quick response. knowledge and asking questions is very important for cancer patients to do to help themselves. I also believe strongly, in being part of an ongoing support group, which I luckily belong to. There should be more of these groups available for patients to turn to.

        Also we need to make more people aware that November is Lung Cancer Awareness month and we have to work to take away the stigma of having lung cancer.
        You’re an example of someone who is dealing with this and a non smoker. This is the one cancer where the patient is blamed for their situation!
        Thanks again for your insight.



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