LUNG FORCE Heroes
Janet F D
In March 2011, I was healthy, a bit overweight but 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. Surgery will 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 the doctor 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. My husband and I drove to a nearby restaurant for a very late lunch, and came out to find our car had a flat tire. Not a very reassuring start.
The next few months revolved around my daily appointments. Perhaps the toughest part was telling my autistic adopted son that he might lose another mother to cancer. My bucket list became laser-focused on helping him prepare to live on his own. Despite fatigue and severe esophagitis, I was able to attend my niece's wedding a month later. You haven't lived until you've had Ahi tuna encrusted in coffee beans-pureed for a liquid diet. At one point I was taking ten different meds to control pain and side effects. My butt was dragging, my blood values tanked after one full dose of chemo, and I broke out in hives during my second red cell transfusion. But gradually, I started feeling better.
It all seemed worthwhile when my first post-treatment CT scan showed my lymph nodes had resolved and the primary tumor had shrunk about 90%. I wanted that tumor OUT, if possible. I had 15 appointments in 16 days to determine if the surgery would be an acceptable risk-we only had a short window in which to do surgery before radiation changes would make it too risky. Juggling that schedule generated a lot of additional stress - my family's life revolved completely around my cancer. The last procedure, a PET scan, showed a hot spot on my collarbone. My pulmonologist quickly arranged an MRI scan for the next morning, and a surgical open biopsy on the following day. To find the tiny suspicious lymph node, the surgeon used an innovative combination of injected radioactive tracer and a Geiger counter. Two nodes contained cancer.
I was now a metastatic lung cancer patient. The panic bowled me over like a 50-foot wave. Alone at home, I became a puddle of hopelessness - for about an hour. Then I shifted gears and got busy asking questions in an online lung cancer forum. The support I received there was essential for maintaining hope while I processed my new diagnosis. They helped me accept there was no point undergoing a risky lung surgery with a tough recovery when it wouldn't cure me.
Together my oncologist and I decided to start a new chemo after a couple of months, to give me time to recover from my first line treatment. I appreciated that he listened to my concerns about the delay, and that he was careful not to give me an expiration date that might take away hope. I didn't want to die before applying for my Boeing pension, so I asked how long I had left. He estimated about two years.
In the next ten 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 asked my doctors if I should try it, but they hadn't heard of it. I found the trial listing online, then contacted trial sites until I found one accepting patients. They agreed to test my existing biopsy samples even though I could not fly out to their location 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, we mutually agreed on a more aggressive treatment - 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 lung inflammation and my new appreciation for 'roid rage. 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. It 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.
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 New England could test for it. No one at my home clinic knew anything about it. On my last full day my nephew, I realized the trial 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 the center's director himself. He told me they could now test for additional mutations, including ROS1. I gave him permission to test my remaining slides.
A week later, another doctor performed a bronchoscopy on the larger of my new nodules. He got a good sample, but couldn't find any cancer cells. The biopsied nodule could be inflammation, BOOP, or cancer. The other nodule was too small to biopsy.
The very next day, the center director emailed me to say I had "an impressive ROS1 rearrangement" and they had an opening in a crizotinib trial for me, if I wanted it. Crizotinib is a twice-daily pill that targets cells containing certain mutations, including ROS1. It produced a terrific response rate in the initial trial with substantially fewer side effects than chemo for most patients. He also said I could join the trial later if I didn't have active cancer now. I was so excited that I almost screwed up forwarding the email to my oncologist.
The following morning, my oncologist called, also excited by my ROS1 news. If the new nodule was cancer, he agreed I should enter the ROS1 trial rather than restarting chemo.
That afternoon, mu pulmonologist called. He had taken my case to the Tumor Board, and their consensus said the biopsied nodule was radiation changes. I was to restart prednisone. (My husband asked, "What will he give ME when YOU restart steroids?") In a month I would have a CT to determine if the nodules responded to prednisone, or continued growing. I'd come to accept that living with stage IV lung cancer brought uncertainties, but that didn't make the waiting easier.
The CT scan showed the larger nodule had not changed, but the smaller nodule had grown nearly fifty percent. The good news was that I could once again ramp down off prednisone. The bad news was that the smaller nodule was likely cancer-I needed to either restart chemo, or join the clinical trial.
I was on the phone the next morning to the trial center, inquiring about how to join. Their doctors said I might be able to join the trial without having another biopsy. After four days, I was flying with the intention of staying until I was accepted into the trial, and wondering why the heck I was traveling a thousand miles away from my home and family to try an experimental cancer treatment that might not work. My concerns were not eased by the delays caused by Hurricane Sandy, which shut down the trial sponsor's headquarters in New York City during my screening period. My acceptance into the trial came at the last possible minute before I was to fly home.
I took my first crizotinib pill November 6, 2012. My first scan eight weeks later showed both nodules were gone, indicating they likely were both cancer. I have enjoyed No Evidence of Disease (known to cancer patients as "NED") since January 2013. 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.
I feel overwhelmingly grateful for everything and everyone that has helped me survive as long as I have: compassionate healthcare providers, insurance that paid for most of my care, family and friends who supported me, a knowledgeable online lung cancer community, medical science that discovered new ways to treat my condition, and all the prayers and good wishes lifting me up throughout my cancer journey. I'm acutely aware that many lung cancer patients are not so lucky. Most patients don't know about the new treatments like the one I'm taking-even some doctors don't know. 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.
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. True, it's not the same life I had Before Cancer. I can't do the active sports that I used to do. Yet, I'm happy to be alive and have good quality of life on targeted therapy. I've already lived beyond my prognosis. I will stay with targeted therapy and other clinical trials as long as my quality of life makes it worthwhile. Lung cancer research has provided more new treatments in the past four years than in the previous four decades. With more support and funding, we can work towards making lung cancer a chronic illness, and even curable. We lung cancer patients deserve that hope, and a cure. Every one of us.
First published: February 8, 2016
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Hero stories are the point of view of the Hero and not necessarily the American Lung Association. The Lung Association does not endorse any specific provider, facility or treatment.