Tucatinib

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leftfootforward
leftfootforward Member Posts: 1,726
edited July 2020 in Stage IV/Metastatic Breast Cancer ONLY

anyone out there on tucatinib? I just took my first day and wanted to see how s everyone was doing who is on this drug. I am really hoping it stop the tiny cancer lesions I keep growing in my brain.


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  • Holyhope
    Holyhope Member Posts: 16
    edited June 2020

    Hi left foot,

    My mom is on it , how are you feeling? I noticed she is super fatigue sleepy most the time, and she’s someone who has a sleeping problem. Some nausea but not too bad where it can’t be controlled. I hope it will stoppp your brain lesions as well, there is a lot of success with this drug during its trial I heard , so i am hopeful.

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited June 2020

    holy hope- I just added stimulants to my drug list of medicines I’m taking because the fatigue was too much. I’ve been in treatment for almost 8 years straight so the neuroncolgist said my body is just tired. The stimulants help but I’m still fatigued. I wonder if the tucatinib was a contributing factor. mother than fatigue I am feeling good. So far it’s treating me well and has been pretty easy.

    Best wishes to your mom.

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  • Holyhope
    Holyhope Member Posts: 16
    edited June 2020

    Leftfoot - stimulates you mean as in steroids ? She also does have stomach pain too, she has liver mets, and that’s what we are trying to take care of with this drug, but some symptoms of Tucatinib are similar to liver mets symptoms, so I’m a little anxious to whether it is effective on her, like are the tumors growing or is it side effects from the drug , she’s handling it okay but not the best her appetite has decreased as well, but either way thank you for making this post I’m glad to hear your 8 years in kicking butt I wish you many many more years

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited June 2020

    I meant adderal when referencing stimulants. I need some extra energy. Sorry for the confusion.

    My appitite is also down and I notice I am not so interested in eating meat anymore. I am drinking carnation instant breakfast and smoothies with protein powder. I am not sure if this is tucatinib or the adderal or a combination of the two.

    I also have liver Mets. I am on kadcyla to help with that.

    Take care and I hope you mom does well.

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  • Holyhope
    Holyhope Member Posts: 16
    edited June 2020

    leftfoot- I think this is from the Tucatinib , because my mom is having decreased appetite, interesting part is she didn’t have any symptoms in the beginning, she started developing them about a week ago, which was about two weeks into taking the drug. I don’t know I’m gonna have to call her doctor soon cuz I don’t think she is handling the side effects that well which is worrying me

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  • dya
    dya Member Posts: 35
    edited July 2020

    Hi there. I’m looking for someone who receives Tucatinib in combination with something else than Xeloda. I’ve received Xeloda as a line of treatment before and it failed. Therefore the oncs do not want to give me Tucatinib on that basis. I receive Taxol and Herceptin, but had dozens of brain lesions. Taxol and herceptin appear to have slowed or contained the mets elsewhere in the body, but taxol doesn’t pass blood brain barrier and herceptin in the past has proved to be not sufficient to slow the spread. I strongly believe adding tucatinib to the mix may buy me some time, but the oncos are reluctant because no study exists to support this yet. I’m so discouraged.

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2020

    day- I am on tucatinib and kadcyla. I was/am in a similar situation as you. So this is a combination you could fix

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  • dya
    dya Member Posts: 35
    edited July 2020

    I’ve already gone through Kadcyla. Nevertheless that is not xeloda and tucatinib . I hope I can try to convince my onc to try it as compassion treatment

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2020

    I had also previously been on kadcyla. But when I got into a clinical trial for neratinib they put me in the arm with kadcyla. I guess my zmO just decided to keep me on it even after neratinib failed.

    So far so good once they decided that my anemia was from the blood transfusion and not the combination of drugs.

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  • dya
    dya Member Posts: 35
    edited July 2020

    The existing studies pair herceptin and tucatinib, so I believe I may have higher chances to get it with herceptin and taxol, rather that restart on Kadcyla.


    I just feel I’m fighting an uphill battle to survive.

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