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Looking for folks taking repotrectinib for ROS1 mutation

debbiemiranda
debbiemiranda CSN Member Posts: 4
in Lung Cancer #1

My husband was initially diagnosed in 2016 with non small cell adenocarcinoma. He underwent a right lower lobectomy, chemo, and radiation. Fast forward nine years and it is back, this time it has metastasized. He has the ROS1 mutation, the only option for us is a TKI. He started taking repotrectinib April 2. Anyone else out there taking this medication for stage 4 lung cancer with this mutation? We would love to discuss side effect management, cancer symptom relief, all things. Thanks very much for reading.

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Comments

  • bunnyfufu
    bunnyfufu CSN Member Posts: 1 Member
    #2

    Hello. That’s me, too!
    Cancer survivor. Advanced Lymphoma. 25 years later I have stage 4 lung cancer metastasized to spine, skull, ribs, pelvis. Left lung removed. Currently taking Repotrectinb.

    I’m have ng a rough go of it but hopeful. I wish food tasted good! lol . How about you?

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  • debbiemiranda
    debbiemiranda CSN Member Posts: 4
    #3

    Very sorry to hear you are in the same boat. :( Have you found other people taking this medication? We have so many questions…how long have you been on "repo"? Did you take any other TKI before starting it? Along with the loss of taste, what other side effects have been most notable? Did you/have you had to adjust your dosage of repo?

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  • debbiemiranda
    debbiemiranda CSN Member Posts: 4
    #4
    https://csn.cancer.org/discussion/comment/1722396#Comment_1722396

    Hey Bunny,

    Gonna try again, looks like my last comment didn't actually reply to your comment. Here it is:

    Very sorry to hear you are in the same boat. :( Have you found other people taking this medication? We have so many questions…how long have you been on "repo"? Did you take any other TKI before starting it? Along with the loss of taste, what other side effects have been most notable? Did you/have you had to adjust your dosage of repo?

    Hope you are well. ❤️

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 155 Member
    edited May 6 #5

    You guys may have more luck or at the Ros1ders groups

    https://www.theros1ders.org/

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  • debbiemiranda
    debbiemiranda CSN Member Posts: 4
    #6

    I tried that a month ago. I am not sure if that account is still active. Both my husband and I have requested to join the group via instagram and facebook. We have completed the form twice each. No luck. Hoping this forum will connect us with folks.

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 155 Member
    #7

    Hopefully your request got processed.

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  • cmpattberg
    cmpattberg CSN Member Posts: 10 Member
    #8

    I'm not sure if I have loss of taste or taste now 'different' that before - not for the better.

    I have ROS1, but I am on Entrectinib. I did not know there are alternate meds that can be taken. I'm only about 1 month into this.

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