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Is anyone taking TUKYSA ?


I have been taking this drug for about 4 months now. I was started at 600 mg but had to drop to 300 mg daily due to serious diarrhea.It is supposed to be able to cross the blood/brain barrier and stop MBC from getting into your brain. I had 4 brain Mets removed in 9/2020 with radiation. Does anyone else take this and what is their experience ? This drug was a part of the HER2Climb trial.


  • elenas401
    elenas401 Member Posts: 170

    I was just prescribed Tukysa and will get it delivered next week. I have progressed on Herceptin and Perjeta but have not been diagnosed with brain mets,. Everyone on here on Tukysa seems to have brain mets and I'm concerned that I'm getting Tukysa now and not saving it for if I have brain mets later. Has anyone taken it for other involvement?

  • kitkat703
    kitkat703 Member Posts: 6

    Hopefully, this will PREVENT brain Mets. This drug can pass the blood/brain barrier and the hope is it can prevent mbc before it gets in the brain. It was just approved in 4/2020 so it's just becoming more used and prescribed now.

    Watch out for diarrhea, its one of the worst side effects, in trials a few people died just from diarrhea. Keep that in mind and keep your dr informed.

  • Txsurvivor13
    Txsurvivor13 Member Posts: 12

    Hey! I am working on getting enrolled in the trial for Her2Climb. I just had significant progression on Herceptin and Perjeta. I don't have mets to my brain. My progression was to several bones and lung. I was reading about the diarrhea and how horrible it was. I will be interested to see y'alls journey with this.

  • kitkat703
    kitkat703 Member Posts: 6

    I just got my second CLEAN brain MRI since starting Tukysa. :-))))

    This is not just for brain mets, but since Tukysa can get into the brain,it will hopefully keep MBC from taking hold in your brain, previously un-reachable with typical treatments.It is an anti-cancer drug that can go where no med has gne before.


  • Sunny1997
    Sunny1997 Member Posts: 18

    Is Anyone taking Tucatinib with Herceptin only, no chemo??

    I was on Kadcyla for the last 6 years, after I had progression on the Herceptin and Perjeta.

    I have had to stop the Kadcyla as I've been diagnosed with cirrhosis of the liver, with portal hypertension, ascites, and esophageal varices. All of this presumably due to the cumulative effect of all the chemo I've had since my diagnosis 25 years ago.

    I have asked my oncologist about going back on just the Herceptin and Perjeta, as it did keep me Ned for almost 3 years, but she was not keen on the idea, stating that you don't go back on something that you had progression on.

    Any further chemotherapy could put me into acute liver failure, so I am researching like crazy trying to educate myself on what's out there before my next visit with my oncologist.

    I've been off the Kadcyla since October, and my most recent pet scan on Wednesday showed that I am still thankfully NED. I've got labs this coming Monday, so more info to add to the equation.

    I even contacted Seagen,the maker of Tukysa, looking for information on possible liver issues when just taking it with Herceptin, but they couldn't help me🤷

    Any info at all is appreciated!

  • anotherone
    anotherone Member Posts: 550


  • kitkat703
    kitkat703 Member Posts: 6

    Howdy. UPDATE. I have known gone for over a year with no new brain mets.

    Glory be to God!!

    I still use another alternative treatment, which I believed helped me go NED after only three rounds of Taxotere, perjeta, and Herceptin. Now I just do Herceptin (Hylecta) every 3 weeks, infused into my thigh via needle. Don't ever give up on God or yourself.

  • moderators
    moderators Posts: 8,289

    Wonderful news, @kitkat703!❤️