Shared: an amazing tale of survival

As a follow up to Craig’s very informative post about ROS1 mutations, I have asked my friend Mateo for permission to reprint his sister Sara’s experience. Mateo, like Craig, is someone I met thru the online lung cancer support group at INSPIRE. The lung cancer support group is a place where anyone (participants come from around the globe) touched by this awful disease can post a question, requests for prayers, or just share whatever is on their mind. Without fail, other members will respond with compassion, caring and an amazing wealth of information drawn from hard won personal experience. Mateo’s story:

A Hopeful Message

I wanted to share with those lung cancer sufferers and their loved ones this update on my sister Sara. It’s a very hopeful message.

About six months ago, I joined the online INSPIRE community. My sister Sara (age 48 and mother of two boys, ages 11 and 7) had just been diagnosed with stage IV adenocarcinoma, characterized by malignant pleural effusion. My first message was titled “Cancer Strikes My family: We Never Saw It Coming.” I was immediately showered with compassion by everyone there (Judy, MichiganLynn, DKHarris, Tina-1962). And I was educated.

The INSPIRE message board enabled us (myself and three other siblings) to identify the key words necessary to understand Sara’s condition. Very quickly we learned which questions to ask the doctors. “IntheAir” reached out right away and gave me hope (we’ve exchanged a hundred emails since then), and “CraiginPA” was very instrumental in encouraging us to have Sara’s initial biopsy retested at Mass General Hospital, which we did (her initial biopsy had come back negative for all mutations). Sure enough, Dr. Alice Shaw’s team discovered markers for ROS1. Sara had already endured 3 rounds of carboplatin/alimta by then, and she was not doing well at all. We believed her to be nearing the end. I wrote to Dr. Shaw and pleaded for Sara’s appointment to be moved up a week, and she kindly consented. Sara’s body was in bad shape: all of her counts and levels were way off. Many things weren’t working. Dr. Shaw’s team worked on her for several days around the clock and got her strong enough to enroll her in her clinical trial for crizotinib. I have to emphasize that this was no small feat.

At the time, Sara had two small (4 mm and 2 mm) brain metasteses. She was set for proton therapy, but that procedure was delayed as Dr. Shaw wanted to try to stabilize the lung cancer first. The cancer had spread to her other lung and a spot on her liver was also detected. Sara’s pleural effusion was a steady 1100 cc per day (it had gone down after the first round of chemotherapy, but it began climbing, much to our despair, between rounds 2 and 3). Dr. Shaw put her on crizotinib about 12 weeks ago. The impact was almost immediate. Sara’s acute pain was gone in less than 48 hours. Steadily, her pleural fluid diminished, and with it, her cough. It took about a month for the fluid to stop altogether. She had been on 4 liters/hour of supplemental oxygen and she required less and less. She regained her appetite and started putting on the weight she’d lost. After one cycle (28 days of crizotinib at 250 mg twice a day) she had shown an amazing response. Her side effects were almost nil: some ankle swelling, which she controlled by elevating and wearing compression socks, and some of those visual effects (brief shadowing images when the lighting shifted suddenly).

But this story gets better. After two cycles, she was scanned. The pleural rind covering her lung was resolved; she would not need decortication followed by talc pleurodesis. In fact, she had her pleurex catheter removed a month ago. Her lung is now able to expand more and more. She’s completely off of oxygen and walking up to four miles a day. Her liver function (indicated by albumin level) is 100% back to normal. The larger of her brain mets has shrunk to the point where doctors no longer deem radiation necessary, and the smaller one has completely disappeared, indicating, perhaps, that crizotinib crosses the blood-brain barrier.

She has her life back. She’s hauling her kids to ball games and getting back to work. Her house is her castle again. She’s cooking and gardening and entertaining family and friends. She’s overjoyed to be mothering her boys again and will resume yoga classes again this week.

Of course, we are very concerned about drug resistance and we continue to monitor reports on second-line drugs and immunotherapies. Dr. Shaw has since identified Sara’s fusion partner (ROS1 gene has fused with CD74 of chromosome 6, i believe), and she and her team have created a cell line so that they can try to learn through chemosensitive tests which second line drugs are likely to work for Sara if or when the time comes.

If I may . . . Sara’s case exemplifies why people in the know constantly urge people to go in for further testing. As more and more mutations are discovered, there are more options besides standard of care; better options in many cases. Were someone I know to be stricken with NSCLC, I would recommend watching webinars of the latest findings. For example, a site like this one, which features a number of recent short lectures by some of the world’s leading lung cancer researchers, including dr. Alice Shaw:

I am grateful to everyone who has shared advice and extended sympathy to me and my family. I will continue to study the new findings coming out and to share any information that comes my way.


8 responses to “Shared: an amazing tale of survival

  1. Thank you for sharing this, Linnea. I am sitting here crying with happiness for this family. I will be sure to watch this video as we search out the next phase for Kurt’s treatment. Take care and all the best- Jamie

  2. It is always so good to hear of others who are being helped with current research. Thank you for sharing this good news Linnea

  3. Thank you for sharing this, another amazing example of the impact Dr. Shaw and her team are having as well as the information and support you and the community of survivors are providing. As always, thinking of you and missing you all

  4. Thank you, mateo, for sharing that wonderful testimonial on Linnea’s popular site to help show how new breakthroughs are happening in lung cancer and learning about them in time can make a difference. Maybe a video of Sara’s story should go up on the MGH web site page on lung cancer mutation-targeted treatment next to Linnea’s. 🙂

  5. Hi I am Ifzaal and I want to ask you something, actually my mother is also suffering from lung cancer and doctor prescribed her crizotinib which your sister sara was taking. My doctor also told me that my mother must continue that medicine throughout her life even after recovery. I want to know that is your sister also continuing crizotinib after her recovery. Please guide me I am waiting for your reply.

    • Ifzaal, sadly, Sara passed away some months ago; not so very long after her brother shared her story. I can tell you from my own experience that someone who is on crizotinib will need to take it until it is no long effective. When you have a mutation, your cells have become programmed to become cancerous, and the crizotinib disrupts the process. However, eventually cancer will find away around a treatment such as a crizotinib, and then a new treatment (mutation inhibitor) must be found. There is no way to predict how long any one treatment will be effective for a particular individual. In my case, I was able to stay on crizotinib for almost three years. It doesn’t work as long for some, but I know people who have been on even longer than I was. Best of luck to your mother.


  6. Linnea, I am really very sorry to hear about Sara ” May her soul rest in peace!!”. I thought she would be helpful for my mother. Well I am curious to ask that whether you had undergone chemotherapy and was it effective for you and how many cycles of chemotherapy have you gone through. And one more thing are you still on crizotinib.
    I would be really obliged if you would reply as soon as possible. Thank You


    • Ifzaal, I had four rounds of chemotherapy (cisplatin/taxotere) back in 2005. I am no longer on crizotinib–I have been on a second generation ALK inhibitor since September of 2011. If you click ABOUT at the top of the page, you can learn more about my own treatment history.

      Good luck,

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s