Introducing myself

I was diagnosed with advanced non-small cell lung cancer (NSCLC) in May 2011. After two chemotherapy regimes and two radiation protocols, my cancer became metastatic. I used information obtained in online forums to get my tumor tissue tested for newer molecular markers and find a precision medicine clinical trial (I’m ROS1+), and have had No Evidence of Disease since January 2013. You can read the longer version of my lung cancer story on my GrayConnections.net blog here: grayconnections.net/2014/11...

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23 Replies

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  • Welcome to the community, Janet!

    We are so glad you are here and can't wait for your participation in the Ask Me Anything about precision medicine on May 4!

  • Thanks, Travis! Looking forward to the Precision Medicine AMA on May 4.

  • Hey Squanch! Happy to see you here. Looking forward to that May 4 AMA program.

  • Hey Denzie--good to see you here! I actually created an account here as Squanch, but figured by now I might as well use my name.

  • Wonderful news, good for you for taking charge of your journey and now are cancer free! congratulations!

  • Thanks frisk. I'm not bold enough to say I'm cancer free, since I can't know if any tumor cells are still hiding somewhere in my body. I'll gladly claim NED (No Evidence of Disease) though!

  • Hey Janet - Great to see you here. I'm looking forward to the AMA.

    Anita

  • Hi Anita. Nice to see a familiar face!

  • Hi Janet, welcome! I am very excited about the AMA event. I will be at the ONS conference in Denver at the time, but will try my best to sneak away and get on a computer sometime during the AMA. I was deeply touched by your story on your blog. Like so many other folks here, you have persevered even as the roller coaster ripped around another finger-gripping curve. We are all so glad you are here to tell your story. Bless you!

  • Thank you, Peggy. I'm looking forward to the AMA event!

  • Janet you are the poster woman for courage and persistence. So happy you joined us. This journey certainly has its ups and downs and you've had them all. Congratulations on being cancer free for 3 years. I hope that continues for many years.

    Jean

  • Thanks jeanE41! I'm hoping to dance with NED for many years to come. Good luck with your treatment as well.

  • Hi Janet -- I know yout name from the Lung Cancer Group on Inspire -- Great to see you hear - You're always provided us with a wealth of information!! Thanks for all you do!!

    Lisa

  • Thanks! Hope I can be helpful to this group.

  • Hi Janet,

    I heard about you from my oncologist at SCCA in seattle. I had surgery and chemo, and 3 years of NED finally it came back. Now they just found out from FoundationOne that I have CD74-Ros1 fusion from my previous tissue taken 3 years ago. I will start the clinical trial next week with Entrectinib, instead of the FDA-approved Critzotinib. I hope I choose the right path. I would like to hear your comment. Thanks

  • Hi battambang100,

    I know ROS1-positive lung cancer patients on the entrectinib trial who are doing well. My Denver oncologist Dr. Camidge tells me the drug is chemically similar to crizotinib, but has the added benefit of being able to get into the brain. Seems like a good choice for your first ROS1 inhibitor. I hope it works well for you!

    Janet

  • Hi Janet,

    My oncologist said to me that he would like me to be on Entrectinib first. If it does not work I can fall back on Crizotinib later. I would like your comment if it is possible to switch back and expect good result from this drug

  • Hi battambang100,

    Do you have ROS1-positive NSCLC, or ALK-positive NSCLC?

    Assuming you have ROS1+ NSCLC (because that's what I know):

    I'm uncertain whether it would be helpful to switch to crizotinib if entrectinib is not effective for you--according to Dr. Ross Camidge at University of Colorado. entrectinib is very similar to crizotinib. One big difference between the two drugs is that entrectinib crosses the blood-brain barrier to treat cancer in the brain, while crizotinib does not treat the brain.

    In the USA, crizotinib is approved for ROS1, while entrectinib is still experimental. We have some preliminary data from the entrectinib trial that indicates entrectinib works for some ROS1 patients, and it does appear effective against brain mets. So, if you have brain mets, entrectinib may be more appealing for a first line treatment.

    If you have difficulty tolerating entrectinib, you could certainly try switching to crizotinib. Whether you can switch from one drug to another after progression in the body, and have the second drug be effective, is less clear. ROS1 patients who progress on crizotinib in the body are not eligible to participate in the entrectinib trial, because entrectinib does not effectively treat the resistance mutations that can develop on crizotinib. I haven't seen any data that indicates whether crizotinib would be effective against resistance mutations that develop on entrectinib. I will ask Dr. Camidge about this and get back to you.

  • I asked Dr. Bob Doebele (who runs the entrectinib trial at University of Colorado) about using crizotinib after entrectinib. This is what he said:

    "I have been enrolling ROS1 patients on entrectinib with main rational that it will better treat or prevent brain metastases. So far the data is looking very promising. I’ve attached the most public data that states that the response rate is 75% and the PFS is 19.1 months (although immature and hopefully will be longer with longer follow-up).

    Not clear that crizotinib would overcome mutations generated by entrectinib (although we don’t know what those are yet and not clear even how often mutations are cause of resistance for crizotinib). Also crizotinib could overcome MET-mediated resistance if that occurs."

  • I appreciate your quick response. I think I understand the rational of my oncologist to sign me in the entrectinib clinical trial in Seattle. The reason I asked the question in the first place was what is next for me if the entrectinib does not work or stop working some time down the road. By the way, I'm a CD74-ROS1 fusion according the Foundation One test done last month on my old tissue collected about 3 years ago. Now I'm 14 days into the trial, and it seems to improve my symptoms. My main problem with its side effect is the constipation ( I'm open to any suggestion you might have to improve this). Again thank you for your reply.

  • Constipation is a common side effect with Xalkori too. The ROS1ders have compiled an overview of crizotinib side effects and ways we cope here:

    ros1cancer.com/2017/01/05/p...

    You have other ROS1 treatment options after entrectinib. Lorlatinib has just received breakthrough status for ALK, so hopefully it will be approved soon and may be available off-label to ROS1 patients. The TPX-0005 trial recently started, and will hopefully treat some of the ROS1 resistance mutations that develop on crizotinib. Many ROS1 patients seem to respond well to Alimta chemotherapy (alone or in combination with other chemo drugs); the ROS1 superdocs sometimes use chemo to bridge patients who are waiting for the next trial to open.

    If you'd like to join a large community (163 members and growing) of ROS1+ cancer patients and caregivers in a private FB group, you can

    1) Fill out this link so that our group learns a bit about you: goo.gl/forms/o4ZU9zFQFyXKX4rm2

    2) Go to our Facebook group (https://m.facebook.com/groups/ROS1cancer/) and request to join.

  • I already did steps 1 and 2 above. I should have asked this question to my oncologist, but ask you anyway. FoundationOne tested my three years old tissue. Is my current mutation driver today the same as back then given that I had only surgery followed by chemo.

  • I can't answer whether your cancer is still the same genomically now as it was two years ago--cancer does evolve over time, and each cancer is unique. However, my understanding is that surgery most likely does NOT put "evolutionary pressure" on cancer cells, and chemo doesn't seem to silence a driver oncogene in many cases. You very well could get useful mutation data from your older, pre-treatment tissue.

    In my case, my tissue that eventually tested positive for the ROS1 mutation had been collected about 1 year before the ROS1 test, and I had chemo and radiation between the time it was collected and the time it was tested. I still responded well to targeted therapy for ROS1. Given that most of my cancer cells tested positive for ROS1, it's quite possible that the chemo and radiation I had before the tissue was collected might have killed off other types of cancer cells, leaving just the ROS1 cancer. This might explain why I have responded so well and so long to my targeted therapy. Just speculation, but Dr. Camidge says it sounds plausible.

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