Less than 1% odds

As I explained in my previous post, I tested positive for the ROS-1 genetic mutation! Essentially what this means is that they’ve been able to identify my cancer cell’s exact mutation. These mutations have been studied and they’ve actually created targeted therapies (oral medications) that have shown amazing results to reduce and control the cancer. Some people have been on this medication for over 3 years and are still seeing results! I was beyond thrilled to receive this news from Foundation Medicine and was so thankful that I sent my tissue away to the US for further testing since they don’t test for these markers in Canada. Currently in Canada, they test for only 2 genetic markers (ALK & EFGF) related to lung cancer. In the US, for a fee of $6000, they tested the tissue that I got from my biopsy for 315 markers. Had I not been aware or able to send this tissue out I would never have learned about my marker!

My doctor explained to me that I had less than a 1% chance of having this genetic mutation so needless to say when the results came back we all did a happy dance in the examination room (and I may have cried but that is no shocker to all those who know me). While we had planned to begin combination treatment of radiation and chemotherapy last Wednesday, this news changed our game plan a little.

There is a drug available from Pfizer, called Xalkori, that was approved in Canada on the day of my diagnosis. The coincidence that this drug, which costs $9600/month, was approved to treat people with ROS-1 markers on the exact day that I was diagnosed still blows my mind. Had it not been approved we would have to have paid for this drug entirely out of pocket which would be about $100,000/year! Thankfully I am partially covered by Dax’s health plan which reduces the fee to about $2000/month. My oncologist has decided to try a 2-week trial of this drug to see if it is effective and if my cancer responds well to it. I will get an x-ray on Monday to see if it is shrinking or not. If it is shrinking, we will continue with the pills until it stops shrinking and then use radiation and chemotherapy. If it isn’t responding, we will go back to the original plan of combination treatment immediately. We are hopeful that Xalkori will shrink it enough to make the amount of radiation less toxic and have a better chance of getting it all! The side effects of this drug are also fairly minimal and I’ve been fortunate to feel pretty well so far. Hopefully I am able to continue on this route!

These are just some of the many reasons why I am so appreciative to all those who donated to support me as I fight cancer! I am obviously unable to work since my diagnosis so Dax and I can’t thank you all enough for your incredible generosity to help us fight. I can’t wait to continue to share positive news with you all!

Lastly, after learning about all of these advances and the fact that these tests are only available in the US, I’ve seen first hand the importance of funding for lung cancer research and that it is a women’s cancer too. None of the proceeds from the “weekends or runs to end women’s cancers” are given to lung cancer despite the fact that it is the most commonly diagnosed cancer in Canada. Not many people realize that more women die from lung cancer each year than all women’s (breast, uterine and ovarian) cancers combined. More young, non-smoking women are being diagnosed all the time. Lung cancer among never-smokers is actually twice as common in women compared to men. I hope to increase lung cancer awareness and hopefully end the “stigma” associated with it.

One step at a time!

#LIVINGwithlungcancer

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16 thoughts on “Less than 1% odds

  1. I am also doing the happy dance for you and your family. Great news and great you are sharing to advance the cause and hopefully eradicate this awful disease soon. Cheers, stay strong, you are on your way to recovery. Prayers always. Say hi to your Mom! Christine Lefebvre xx

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  2. Absolutely wonderful news!!! There are a few Angels in heaven watching and helping I think 🙂 Thinking of You and prayers said that everything continues on such a positive path and that your story continues to be an education for all of us

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  3. Your post put a smile on my face! I continue to pray for you, although I’ve never met you:)
    Keep fighting!!!!!!
    God bless…

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  4. This post brought me joy today! I am so glad to hear of your testing and what possibilities there are. Sending positive thoughts and prayers to you and your family!

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  5. Congratulations Zeb on the amazing news.
    So happy to see the advances in research and you being able to fight this. You’re so strong. Keep it up!!!

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  6. That is wonderful Zebby! I am so glad to hear your happy news and very hopeful that you will have a great response to the treatment. Thinking of you and rooting for you all the way girl! Congrats on the safe arrival of your little boy Jack also – he is too precious :). Wishing you strength and perseverance as you fight the biggest battle of your life, and I am overjoyed you have a beautiful family to surround you and fight with you every step of the way. All my love xxx

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  7. So happy that all is going well for you, Jack and Dax ~ you and your family, all continue to be in my prayers and my thoughts ~ Bon courage!

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  8. Hi Lizzie I hope you brought back some valuable information from the summit. I know a few people who attended it but have not posted anything as of yet. I have been on my Tarceva for EGFR for 8 months now and hope to continue for a long period of time. Need to have something in my back pocket just in case I become resistant. . Keep up the good work. I will do as much as I can.
    Praying that everything will work out for you.
    take care
    Beverly

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