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April Survivor Spotlight - Janet Freeman-Daily

  • April 26 2017

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    April Survivor Spotlight - Janet Freeman-Daily

    Janet Freeman-Daily is a writer, engineer, and a lung cancer survivor. She and Dr. Jack West will be participating in a live “Ask Us Anything” session in Free to Breathe’s online HealthUnlocked community on May 4, 2017.

    Janet has shared her story on her blog, and has given us permission to provide an excerpt below. You can read her full post at this link.

    By Janet Freeman-Daily

    In Seattle, home of Starbucks, everyone drinks coffee. Can YOU tell which of them has lung cancer? In the picture at right, it’s the person on the far right: me.

    In March 2011, I was healthy, a bit overweight, and exercising regularly. However, I’d had a nagging cough for a few months. To make my husband happy, I mentioned the cough to our doctor. Two months, two rounds of antibiotics, one x-ray, and a bronchoscopy later, I spent a very anxious four days waiting for biopsy results.

    When I heard, “lung cancer,” I could barely believe the diagnosis. I called my sister to tell her the news, poured a big glass of wine, and lost myself in a favorite science fiction movie.

    I knew nothing about lung cancer. The facts I found online were not encouraging. As we moved through the various staging procedures, my family and I experienced increasing levels of fear:

    • “It’s OK, it’s just one tumor. VATS surgery will probably take care of it.”
    • “Well, OK, lymph nodes are involved, but still inside one lung. We can remove the lung, right?” (OMG)
    • “There’s a lymph node between the lungs, severe inflammation and obstructive pneumonia. Stage 3a. No surgery.” This is serious. After my mediastinoscopy, my sister left the hospital convinced I was dying.

    I was reassured to hear my oncologist say he considered me curable. I was eager to start aggressive lung cancer treatment. But the universe, it seemed, objected to the treatment plan. The interior of my tumor had died and become colonized by bacteria. Even though we finally found an antibiotic that knocked out the infection, my recovery took weeks. During that time, I developed a clot on my PICC line and required daily self-injected blood thinner. Heaven forbid I should be a boring, vanilla cancer patient! I worried my lung cancer was growing while I waited to start treatment.

    I hit bottom a few days after my second bronchoscopy. I awoke at 3 AM coughing up a lot of blood, and Dr. Kirtland told me to go to the ER. I was released later that morning, just in time to drive 30 miles to my first radiation treatment. The linear accelerator was down two hours for repairs, but I did eventually get zapped.

    Janet’s first post-treatment CT scan showed her lymph nodes had resolved and the primary tumor had shrunk about 90%. She had 15 appointments in 16 days to determine if the surgery would be an acceptable risk. The last procedure, a PET scan, showed a hot spot on her collarbone. An MRI scan the next morning and a surgical open biopsy the day after showed that two lymph nodes contained cancer. She was a metastatic lung cancer patient and was told she had about two years left.

    In the next 10 weeks, my mother died, I started taking prednisone for radiation pneumonitis, and a new three-inch tumor grew very visibly on my collarbone. My extended family gathered for what we thought might be my last Thanksgiving. I had no desire to celebrate Christmas that year. My most memorable gifts were a newly-installed power port and a hint that my hair was coming in curly.

    In my online lung cancer forum, I learned about a clinical trial called the Lung Cancer Mutation Consortium Protocol. It tested lung cancer tumor tissue for mutations in ten different genes. I consulted with my Seattle doctors, but they hadn’t heard of it. I found the trial listing on clinicaltrials.gov, then contacted the trial sites until I found one accepting patients. The University of Colorado Cancer Center agreed to test my existing biopsy samples even though I could not fly to Denver due to concerns my hollow primary tumor might cause a pneumothorax. My entire team was disappointed when all tests were negative. I continued networking with experienced lung cancer patients, and when  my oncologist and I discussed chemo options, I suggested Avastin based on some new research. We mutually agreed on Alimta plus Avastin – he was willing to be more aggressive in my treatment because he knew I understood the risks.

    Ten days after I started the new chemo in January, my collarbone tumor was visibly shrinking. I was extremely encouraged despite a sudden worsening of my pneumonitis and my new appreciation for ‘roid rage. Still, I was glad to finish chemo after six rounds – I was losing my voice frequently, and towards the end I felt like I always had the flu. I began to understand how some people could decide to stop cancer treatment. But I couldn’t argue with the results: all the original tumors were gone, the new tumor had shrunk 90%, and no new tumors appeared. We decided to treat this one remaining tumor as an oligo-recurrence and go for a possible cure — radiation therapy might knock my cancer out for good. My skin burned raw, but I made it through.

    The next PET scan showed no activity around my collarbone. Yay! However…it also showed two new nodules in my “good” lung, both outside the radiation field. Seems I progress whenever I stop chemo. Another bronchoscopy was scheduled two weeks out, after my husband and I returned from a weekend with my nephew in Denver.

    Here’s where the tone of my story changes.

    Months before, one of my online lung cancer friends told me of a new mutation called ROS1. I fit the profile of typical patients who had it, and a Phase 1 ROS1 trial still had slots left, but only a lab in Boston could test for it. No one at  my Seattle clinic knew about it. On my last full day in Denver, I realized the University of Colorado Cancer Center was not far from my nephew’s house. I might be able to personally thank the people who had helped me get my previous mutation testing done. I sent an email Sunday afternoon, and was amazed to get an email back that evening saying I could meet the next day with Dr. Bunn, the Center’s Director. He told me they could now test for additional mutations, including ROS1. I gave him permission to test my remaining slides.

    Janet indeed had an ROS1 mutation, and the University of Colorado had an opening in a crizotinib trial. Her acceptance into the trial came at the last possible minute. She took her first crizotinib pill in November 2012, and eight weeks later, both nodules were gone – indicating they were likely cancer.

    I may be able to stay on this drug for months or years longer. Yet targeted therapies like the one I take do not offer a permanent cure. In time I’ll probably develop resistance to the drug. There IS no cure for metastatic lung cancer. No one can say how long I will live. Sometimes that weirds me out. Yet I’m hopeful that when this trial drug stops working, another clinical trial will be a good match for me.

    It’s an odd existence, living from scan to scan in eight-week increments. I still sometimes experience scanxiety, as we patients call it. I often hide out in the bedroom for days before a scan so my scanxiety doesn’t bite anyone. There is no logical reason for this feeling. My scans have been clean for years, and I have no symptoms that would indicate the next scan should be any different. If I do have a recurrence, I know I have some treatment options. Even if I had no treatment options, I am not afraid of dying. Apparently my subconscious simply overpowers my conscious positive thoughts. It probably doesn’t help that whenever I’m leaving for a scan, my son hugs me hard and says, “Please don’t die Please don’t die Please don’t die.”

    Several events conspired to give me severe scanxiety a few years ago. It felt like a panic attack. Not only was the timing near the anniversaries of my two cancer recurrences, but a friend on a targeted therapy had developed brain mets weeks after a brain MRI, a neighbor had died when her lung cancer spread to her brain covering, and the online ROS1 buddy who had first told me about my clinical trial appeared to be progressing after two years on crizotinib. A network of lung cancer patients provides invaluable support, but it requires accepting that friends will die frequently.

    I feel overwhelmingly grateful for everything and everyone that has helped me survive as long as I have: medical science that discovered new ways to treat my condition, compassionate healthcare providers, insurance that paid for most of my care, family and friends who supported me, a knowledgeable online lung cancer community, and all the prayers and good wishes lifting me up throughout my cancer journey. I’m acutely aware that many lung cancer patients do not have these supports and opportunities.

    Janet has used her understanding of science and technology to educate others and advocate with healthcare providers.

    Lung cancer patients need more than compassion. They need information about second opinions, mutation testing, side effects, treatment options, and clinical trials. They need HOPE.

    Going public about my lung cancer has helped more people understand that ANYONE with lungs can get lung cancer—and NO ONE deserves to die from it. Lung cancer kills about as many people as the other top four cancers combined, yet it receives fewer federal research dollars per death than any of them. Why is that? Are lung cancer patients not worth saving? The answer becomes clear when you google the words “lung cancer people.” No throngs of ribboned supporters; few smiling survivors. You see diseased lungs, death … and smoking. Lung cancer has an image problem. The first question I hear when I mention my disease is: “Did you smoke?” People blame patients for getting lung cancer. The breast cancer community has changed how the world sees their disease. The lung cancer community must do the same. We’ve all done things that impact our health. Yes, it’s healthier not to smoke. But it’s not a sin that warrants the death penalty.

    Precision medicine allows me to live with lung cancer as a chronic illness instead of a death sentence.

    I will stay with targeted therapy and other clinical trials as long as my quality of life makes it worthwhile. Lung cancer research has found more new treatments in the past few years than in the previous four decades, and the pace of discoveries is accelerating. As people begin to realize that ANYONE can get lung cancer (including never smokers like me), the stigma will hopefully begin to fade, and research funding will increase.

    We lung cancer patients deserve hope, and a cure. Every one of us.

    1 comments

Comments

  1. Mary McManus 09:01pm, 04/27/2017

    Thank you for a great article.  You made my day!  I have stage 4 lung cancer and brain cancer.  I’m a nonsmoker!  Right now I’m on a chemo vacation as the tumors in lung due to radiation add chemo are gone!  I go next week for scan to see if cancer is back so thanks for talking about scan anxiety.  Brain cancer treatment won’t know if radiation worked until June scan.  But I’m alive and living each blessed day.  I agree we nonsmokers who have lung cancer need to speak out more.  Thanks for doing so!!  I admire your courage.  Keep talking!

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