Poziotinib...Looking for anyone else in this new trial

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usafmom
usafmom Member Posts: 778
edited February 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hey guys it's been a while. I've had a rough past year..but we will save that for later. Is anyone been in this new trial. I know at the hospital I'm at there are only two of us. My first cycle was tough..got severe rash head to toe,lost 20lbs, mouth sores, skin broke open like crazy that after 3 weeks I was ready to move on BUT we did a scan and the darn drug shrunk and halted almost ever mass especial some in my lungs that were getting very aggressive....So I started a new round a few days ago with a slightly lower dose and about ten extra drugs for all the SE. So anyone else trying this and curious if your doing good or having any SE. I've heard that the SE tend to get better overtime would love to hear anyone else's experience. I know it is a small trial of only 70 total women. Thanks I need advance for any info

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  • sueopp
    sueopp Member Posts: 1,541
    edited September 2016

    Hi Kimber! So wonderful to "see" you! No Ii don't know anything about the trial in which you are enrolled, but wishing you the very, very best. Fondly, SU

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  • usafmom
    usafmom Member Posts: 778
    edited September 2016

    Sweet Sue..I'm so happy you said Hi..how is your son and family doing? I've missed you tons! I've had a rough year lots of developments and surgeries. I fell a few times and fractured my knees ..so have needed some procedures on them to walk but you know me always finding a way to keep going. I'm excited about this new drug it targets more than one of the Her components..it is the new TDM1(kadcyla) or tykerb. It targets three different HER components and has great hope. I had some major growth in some of my lung mets and just one cycle stopped everything growing but I had the worst allergic reaction to it..it put me in the hospital and most patients are having reactions. So they are treating us with steroids and antibiotics to try to minimize. I'm hoping to find someone else and see how they are doing and any tricks they learned. It dried my skin so bad I had 20-30 cuts on each finger. Rash o no whole body that looked like chicken pox. Extreme diarrhea I lost 20 lbs. So this cycle I'm on on a lower dose. So I'm hopeful I can tolerate it since it is working

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  • wam
    wam Member Posts: 168
    edited October 2016

    Wow! This is such good news. My Her2 didnt respond so much to Herceptin, perjeta and taxotere. Your response has given me hope! Keep us posted, please.

    Hi Sueop. I have been reading alot of your posts. You are very helpful.

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  • usafmom
    usafmom Member Posts: 778
    edited October 2016

    Thanks Hun..I too am very hopeful. They did a dose reduction on me and I'm having a ton of gastro issues. So I'm currently in the hospital but I'm still hopeful to stay on the drug. Because of the Her 1 component it gives symptoms similar to lung cancer treatments. So it isn't anything new just new to breast cancer. Hopefully I'm just in here a few days to get fluids and get the diarrhea and vomiting better controlled.. I scan in a week again and so hope it shows good again

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  • wam
    wam Member Posts: 168
    edited October 2016

    I am so sorry you are in the hospital! That is so annoying. I am a control freak. I hope your symptoms can all be resolved and you feel better!

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

    usafmom.....how are you doing on Poziotinib?  I have been on Kadcyla for almost 4 years and it has now stopped helping the 3 cancerous nodes in my chest.

    My onc suggested the Poziotinib Phase 2 Clinical Trial and I am also being considered for Genomic testing.

    I am a 16 year survivor of Stage 4 BC.....original mets to liver, and now to my chest.

    Denise

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

    Poziotinib was a nightmare and I only lasted for 8 days.  

    Now waiting to see if can get Olaparib, a PARP inhibitor.

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