Taking the leap into clinical trials

I was initially diagnosed with non small cell lung cancer in April of 2005. My tumor was large (5 centimeters); a poor prognosticator. However, it had not spread beyond my lungs and I was staged at IB. One week after diagnosis I had the lower lobe of my left lung removed. As I was recovering from surgery my new oncologist introduced himself; Dr. Tom Lynch. I had no idea back then, but I was incredibly fortunate to have Tom select me as a patient. The reason behind his coming to me rather than the other way around? As a young (age 45) non smoking woman, I fit the profile of someone who might be EGFR+ and Tom was an early innovator in the investigation and treatment of EGFR+ patients.

I tested negative for an EGFR mutation but in the process acquired arguably one of the best oncologists in the world; someone who was always forward thinking and cutting edge in his approach to treatment. In fact, I was offered a chance to enroll in my first clinical trial soon after surgery. Because of the size of my tumor, adjuvant chemo was indicated and a trial that would include the addition of avastin was proposed. I was having a difficult time even being convinced to have chemotherapy (Tom was adamant) and I couldn’t wrap my head around the possibility of also being a medical research subject. As it turned out I would not have been a good candidate anyway–I am a bit of a bleeder and I was coughing up blood for weeks post lobectomy (there is a small but significant increased risk of serious pulmonary hemorrhage secondary to avastin).

Fast forward to September of 2008, two months after I’d been restaged to IV and advised that I likely only had three to four months to live. At my scan review after two months of tarceva–tried as a last ditch effort even though I was EGFR-, there was nothing but bad news from the radiologist. However Tom shared that a sample of my biopsy had been submitted for further genetic screening and had come back positive for an EML4-ALK translocation (another example of how ahead of the pack he was—the ALK mutation had been identified as a driver in NSCLC only months prior to that).

As we discussed the significance of this finding we also reviewed my options going forward. The way Tom saw it, there were four possible scenarios. I could stay on tarceva, return to traditional chemotherapy, do nothing (that option only underscored how serious my situation was) or attempt to enroll in a phase I clinical trial that targeted ALK mutations such as the one that was driving my cancer.

Would you believe me if I said I never hesitated but instead leapt at the opportunity to be in a clinical trial? Why now but not back in 2005?

This is why.

This image of my scan says it all. The upper lobe of my left lung was now almost completely clouded with consolidated ground glass tumors which had spread to my right upper lobe. And I had been told that I might have three to four months to live two months ago. The math was easy—I had almost run out of time and out of the four options I’d been provided with, only one seemed to offer a glimmer of hope.

And glimmer is the operative word. There was no precedent for me back then—no reason to believe that this trial might actually prove effective. All Tom could offer me was the fact that I had been preceded by one other participant at MGH. ALK+ like me but so debilitated by disease that they were confined to a wheelchair. Their initial response had been extremely encouraging, to the point where the wheelchair was temporarily abandoned. But then they had died, in part due to the toxic effects of the trial drug on their liver.

So this is what I knew. One before me with a promising response who had succumbed both to disease and to the toxic effects of therapy. That the experimental therapy could in fact prove fatal to me as well. But that my cancer would certainly kill me if I did nothing. An easy choice, after all.

And so, on October 1 of 2008 I had my lead in dose of the drug that would eventually be known as Xalkori.


16 responses to “Taking the leap into clinical trials

  1. Please continue telling your story. I have been following you for several years now, and even though I don’t know you, and I have no connection to lung cancer, you are SUCH an interesting person and such an EXCELLENT writer that you have carried me – the total non-science person! – along on your journey, and I have learned so much. I now have a radiologist niece, and a radiation oncologist nephew, and one of these days I want to share your story with them! We are all so affected by cancer now. From May 2014-April 2015 my daughter (32, young mother) was dealing with thyroid cancer (“curable and treatable” but her case didn’t follow the traditional path). She is now – after a third surgery at M. D. Anderson, with another genius doctor – doing GREAT. A friend has pancreatic cancer and he started chemo TODAY. Another close person has a scan indicating kidney cancer. Two sister have had breast cancer. It is everywhere, and so, reading about you and your path has been enlightening. But as I said, the primary thing with YOU is not your cancer: it is your brilliance! The ability to transmit the trauma and the science, and the joy too, is your special gift. Thanks for your writing and for sharing it with us. I’m just grateful for your Marfa posts, that first brought your blog to my attention.

    • Kristen, thank you! I’m glad that Marfa brought us together. I’m also happy to hear that your daughter is doing well and I wish the best for your friends with pancreatic and kidney cancer—this disease is in fact everywhere. And thanks for saying hi—I LOVE comments—it connects me to those who are reading in a way that is really special.


  2. God Bless You Linnea .

  3. Good writing Linnea. Keep it up! Merry Christmas from your sherpa.
    Love, Linda

  4. Hi Linnea- thank you so much for your posts and your courage and oppenness. I too am a stage IV alk+ lung cancer survivor- diagnosed age 34. You and others several years ahead of me – some of whom I have met and spoken to- are an inspiration and a vital source of encouragement and strength. I follow your posts religiously and look forward to each one.
    Much love, and with hope,

  5. Your journey amazes me. I have followed you for over two years. Wishing you the very best clinical trials available. Lung cancer runs in my family. I am learning as much as possible from people like you to be prepared for my future.

  6. Thank you for sharing your story Linnea. I too have been following your blog for years and hang on every word. A tenuous veil separates the worlds of cancer patients and non patients – we all need to be awakened to the injustices and hardships that exist in the healthcare system. Yours is a voice of strength and knowledge, thanks for using it so well.

    • Chrissy, thank you for commenting. And yes, a recurring theme for me (in all of my life, not just the cancer part) is looking for the commonalities inherent in each situation. I believe the similarities between each of us are greater than the differences.


  7. Thank you for sharing your story. My mom was diagnosed with stage iv nsclc with egfr+. After being told she has a 6 month life expectancy, I repeatedly asked myself whether I was in a bad dream. (It still feels unreal at the moment). I frantically search the Internet for more information. Instead of gaining additional scientific knowledge, I found something more valuable – the stories of patients and caregivers. Stories such as yours gave me support, strength, hope, and a true appreciation of what matters to me.

    • Bhuang, it does have that bad dream quality. Your mom is fortunate to have a daughter like you researching and I’m glad you found something valuable (hope). I wish her the best of luck on this journey.


  8. Wonderful story, Linnea, you are a great inspiration, sorry I’m a little late here. Are you still on Xalkori? I am entering my 40th month and doing well.

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