Poziotinib-anyone on it?

Denny123
Denny123 Member Posts: 1,886
edited May 2018 in Stage IV/Metastatic Breast Cancer ONLY

I have been approved to start this Clinical Trial Phase 2.  I am a 16 year survivor of Stage 4 BC, now with a recurrence in my chest nodes.

Was on Kadcyla for 4 years, which has now failed.

Denise

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  • Kkrenz
    Kkrenz Member Posts: 100
    edited December 2017

    I am not in this trial....but am excited about the prospects as it may be in my future. Please keep us informed and I will be praying for this treatment to kick some "C" a$$ for you.


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  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2017

    Hi Kkrenz,

    Thanks for writing.  I also have a thread in the recurrence thread.  I sure hope that you don't have a recurrence, but I have been dealing with this stuff for 16 longggg years.

    I talked to my other protocol nurse today and the chemo center took bloodwork.  I need to have a CT scan and an Echo soon.

    There are 3 phases of this trial-lower dose, medium, and highest.  The lower dose trial has been completed, so I will be in the medium group at 16 mg pills (this is oral, not IV), for 21 days....a week off, then 21 days, etc.

    The first day I will be at the chemo center for 8 hours and they will do bloodwork every hour or so. (borrrring).

    This is a big chemo center, but I will be the only one on this protocol.  I am in PA, 35 miles from Pittsburgh.  There is a huge chemo center in Pittsburgh, The Hillman center, and there are other ladies there doing this trial.

    What is encouraging is that this chemo has been proven effective on non small-cell lung cancer.

    I am going to copy most of this info to my other thread.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2018

    I finally got the approval yesterday to start on the clinical trial this Tuesday, Jan 9.  Being off chemo for 6 weeks for the first time in 16 years has been making me nervous.

    I have to get bloodwork on Monday, then will get the two 8mg chemo pills on Tuesday.  I also will be given a dose of Immodium to prevent diarrhea and it is provided at the chemo center.

    Since my previous Kadcyla has caused constipation, I am hoping that things will just even out.

    It was originally thought that I would have to stay at the chemo center for 8 hours for hourly blood draws, but that has changed to only a few draws.

    Bitterly cold here in PA with a wind chill this morning of -25 degrees.  Ugh

    Denise

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  • Kkrenz
    Kkrenz Member Posts: 100
    edited January 2018

    Good luck Denise....I will be praying this keeps you going for 16+ years..with no SEs. Keep us posted.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited January 2018

    Denny, I look forward to reading your updates on the trial. I am sure that your experiences will benefit many others. I assume that the trial is for HER2+ people, but I am still interested in hearing how it goes.I add a loud "Amen" to Kkrenz's prayer that this keeps you going for another 16+ years.

    Hugs and prayers from, Lynne


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  • sincitydealer
    sincitydealer Member Posts: 2,712
    edited January 2018

    This trial has had amazing results for EGFR Lung Cancer patients so far, and they're very confident that it will work on HER2+ breast cancer patients as well! Guess they're just starting to test it on breast cancer. I wish you all the best, Denny!

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  • MargaritaMS
    MargaritaMS Member Posts: 199
    edited January 2018

    Denny, it seems you are a trailblazer on this drug and in this study - hopefully others on the study will find this thread and report in. I'm really hoping that it will work well for you and I'll be following your progress. Good luck going forward!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2018

    I got thrush on Tuesday night, and it hurts to talk or chew.  Got a script for Nystatin.  

    I am DONE with this chemo.  I took the last 2 pills on Tuesday and every day, my side effects got worse and I am getting new SE's.

    My face rash looks terrible and I won't go out into public like this, unless the chemo center forces me to.

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  • gramen
    gramen Member Posts: 179
    edited January 2018

    im sorry to hear about the side effects :-( hope you find relief soon. Thank you for sharing info with us.

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  • Kkrenz
    Kkrenz Member Posts: 100
    edited January 2018

    Denny123 - Oh Crap! Crap! Crap!.....I was so hoping that this would work for you.  What is in the pipeline next?  Hopefully the rash and thrush clear up quickly.  Maybe not the same thing, but I got a horrible rash all over my face from Taxotere.  The acne was worse than anything I ever had as a teenager.  It seemed to appear out of no where....literally woke up with it.  The good news was that it went away almost as quickly as it came.  My MO lowered my dose and I never got the rash again.  Can they lower the dose for you on this trial?....maybe that would help!     

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2018

    kkrenz,

    Next is probably Xeloda with Tykerb.  My home health nurse said my thrush is a really bad case.  I had a lot of mouth pain right away, but not the white coated tongue.

    The rash on my entire scalp is healing, I guess. It was so horribly itchy last night that I had a hard time sleeping last night.  Going to take 2 Benadryl tonight before bed.

    They could lower my dose, but the problem is that no one seems to know if it does help BC.  If I knew that it worked, it would give me incentive to try again.

    But I have to heal from this mess before I get something else and meanwhile, my tumors are growing.

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  • sincitydealer
    sincitydealer Member Posts: 2,712
    edited January 2018

    Denny, So sorry to read about your really bad side effects on poziotinib. I've heard a dose reduction helps greatly. Didn't they want to at least try a dose reduction with you?

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2018

    Yes they did suggest a reduced dose, but I would still have to wait for weeks to heal up from this assault before starting again.  I am not happy to be off chmeo (besides those 8 days) for 2 months.

    I will see my onc Feb 9 and told my nurses that I want to go on Xeloda and Tykerb (previously suggested as a third option by my onc).  The protocol nurse said he might suggest another clinical trial, but I want something with a proven track record.

    If a clinical trial is a last resort, that would be different.

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  • sincitydealer
    sincitydealer Member Posts: 2,712
    edited February 2018

    Denny, Have you heard about a trial drug called Tucatinib for HER2? It's supposed to sidestep many of the horrible side effects that others have caused. Maybe ask your Onc about it.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited February 2018

    sincity-thanks for the info, but I am done with phase 2 clinical trails, especially with placebos.  I don't have time to mess around right now.

    Turns out since my tumor is somatic BRCA2 positive, I qualify for a targeted therapy PARP inhibitor called Olaparib.  I have been approved by my health insurance, but since it is a pill and the co-pays are in the thousands, they are applying for grants to help to pay for those.

    Hopefully I will start in about a week.  I have never gone 3 months without chemo in 16 years and getting very nervous.

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  • sincitydealer
    sincitydealer Member Posts: 2,712
    edited February 2018

    Denny, I'm happy there's more options out there for you. Hoping the Olaparib is an easy treatment and does it's job. Here's to many more years of no evidence of disease!

    Peggy

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  • Denny123
    Denny123 Member Posts: 1,886
    edited February 2018

    Thanks Peggy.  I am far from NED since I have 3 very active and aggressive tumors.  Sure would be nice, though.

    Denise

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  • Denny123
    Denny123 Member Posts: 1,886
    edited May 2018

    UPDATE....Just had a scan and only 8 days on Poziotinib put me in almost-remission with No Evidence of Disease!!!!

    Currently on Xeloda and Herceptin for maintenance.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2018

    Congratulations, Denny. Glad to see this good news!

    Tina


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  • Denny123
    Denny123 Member Posts: 1,886
    edited May 2018

    Since Poziotinib worked so quickly, I would try it again if need, but only a half dose!  At Phase 2 they are still trying to determine the toxicity that patients can tolerate.

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