Anyone on Poziotinib?

Options
Denny123
Denny123 Member Posts: 1,886
edited January 2018 in Just Diagnosed With a Recurrence or Metastasis

I am a 16 year survivor of Stage 4 BC and now have active nodes in my chest.  I was on Kadcyla for almost 4 years but it has now stopped working.

Poziotinib Phase 2 Clinical Trial is now being considered, but the side effects sure are scary!

Denise

· Share on FacebookShare on Twitter

Comments

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

    Guess I will be on here talking to myself....got approval from my insurance company today to cover the necessary CT scans every 6 weeks and all "standard of care" requirements.

    I am in PA, have UPMC Medicare Dual with UPMC supplement since I am low-income.

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    I have not heard of that drug. Is it experimental???

    You may want to ask on the stage 4 board as well; that board seems to get more views than this one. I hope the drug is effective for you wih minimal side effects

    · Share on FacebookShare on Twitter
  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2017

    Poziotinib is a Phase 2 Clinical trial and only 75 women in the US are on it.  I did a search for it on here and only 1 lady was/is on it.

    It is very new, so it will take some time to be established if it works.

    Thanks for the suggestion-guess I will post there too.

    Thanks for writing!

    · Share on FacebookShare on Twitter
  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    It must be frustrating to not get replies, but so few are on it, which is likely why. Please update side effects and such, and how you're doing. Hopefully as more people are on it, you can connect.

    I am big on clinical trials and take part in any that I can. Partly because I hope they'll help... partly because I am a science nerd... and partly because I have kids and want to contribute to the knowledge base. So as a mom, thank you for contributing to the knowledge base. I just wish your cancer had not metastasized ... wishing you did not need these darn treatments. Hoping this one is very effective for you

    · Share on FacebookShare on Twitter
  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2017

    KBeee,

    Thanks for writing!  I started a thread in the Stage 4 section, so will copy and paste what I just wrote.  I was an immediate mets gal upon my first dx.  In 2004, my liver was full of BC mets and I went on a clinical trial of Gemzar  

    with Herceptin which saved my life.  In 9 months I was in remission and my liver has remained clear since then.

    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.


    · Share on FacebookShare on Twitter
  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2018

    I have been on Poziotinib for a week, and so far (maybe since I have been constipated for 4 years from the Kadcyla), no diarrhea.  I am taking stool softeners, actually.

    I had nausea for the first 3 days, but not the puking kind.  

    So far my side effects are mouth sores, a sore scalp, acne around my mouth, my nose bleeds are worse, loss of appetite, dry mouth, only a few finger cracks.

    But the best part is the weight loss!  I lost about 5 pounds in a week!  If I lose 17 more pounds I will be back to my pre-BC weight, which would be great.

    I eat a very small meal every 3 hours.

    I take 2 pills per day for 2 weeks, then I will have a week off.  Then 2 more weeks of pills, etc.

    My home-health psychology nurse daughter inquired about home health care, which will help, since they can access my chest port for the bloodwork that I need to get tomorrow.  I am in PA with frigid temps and snow.

    And I will have a number to call 24/7 with questions....like on day 2 when I had an allergic reaction in the late evening and my throat started to close up.  I took a Benadryl, which helped that, but wasn't sure if I could.  Talked to my nurse the next day and she said that Prednisone or Benadryl would work.  I prefer the OTC Benadryl.

    That hasn't happened again since that first day.

    Denise

    · Share on FacebookShare on Twitter
  • 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.

    · Share on FacebookShare on Twitter

Categories