Checking in and update from another "old timer"

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited May 2018

    Congrats on 10 years Janis! You are such an inspiration. I'd be keen to hear more details about your clinical trial when you get started. All the best to you!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited May 2018

    Shutterbug, hi there! Was thinking of you lately and happy to see you check in

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited May 2018

    Way to go! Good luck with your trial. Keep us posted.

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited June 2018

    Hi all,

    Thank you for all of the wonderful shout outs. I have completed 5 rounds of the trial. Its weekly. Side effects are minimal. Achy for a day or so and fatigue. More than normal for a few days.

    I get my next scan in July. Very interested to see what happens.


    Janis

    still eating sandwiches!


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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited June 2018

    Janis. Glad it’s going well. Great to see ya

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited June 2018

    Fitztwins. I've only been on this forum since 2017, so I don't know you. But, I am so happy that you posted your update. It does give me hope.

    I was DX w MBC December 2016. Mets to liver, lung and chest. My whole history we BC and MBC spans 26 years, too much to explain here. I've been on Ibrance/ femara for 16 cycles. I also had y90's about one year ago for liver mets, they are still inactive in June PET. Also, lung and chest mets are responding, but still active.

    My MO told me, in June, that I might live five or ten years. Frankly, I didn't believe her. Of course, she said that's IF my liver mets stay inactive. I've gradually started to understand that it might be possible. Then I read your post. I'm only on my first TX so I have lots of options left open for me. Although, I do have ESR1 alteration.

    So, your lung mets have not bothered you too much? That's amazing. They are still active? So glad to hear your story. Your boys are so handsome. Thanks for sharing here.

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  • JACK5IE
    JACK5IE Member Posts: 760
    edited June 2018

    Congratulations from a newbie! Thanks for posting. It gives us all hope I'm sure, but especially the newly diagnosed Stage IV members like me. So thank you again.

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2018

    sorry I haven't replied, I just read this.


    My lung mets have always been active except for the last scan. They have never bothered me.

    Good luck

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  • holmes13
    holmes13 Member Posts: 214
    edited August 2018

    fitztwins- you inspire us all. How is the trial going?

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2018

    The trail is going well. I went through my first set of scans. The next is the end of September.

    The scan showed no active mets in my lungs (first time). Spine mets not active (but they were radiated recently). My pelvis mets are stable.

    The drug has little side effects. I do feel 'flu like' , as if I feel I am coming down with the flu, for a day or two, but not bad.


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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited August 2018

    Congrats

    what are you taking

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2018

    The trial I am on is Herceptin + ALX148 (Immunotherapy)

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  • Sue2009
    Sue2009 Member Posts: 228
    edited August 2018

    always glad to see your posts. When I 1st came to the BCO site, I believe it was your posts that gave me hope.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited August 2018

    Hi Janis

    Best wishes for your Sept scan. You literally held my head above water when I was dx stage 4 in March 2017.

    Great to hear you active on the board again. I am currently NEAD. Hoping that is the same in Sept.

    Liz x

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited August 2018

    fitz!! So happy to hear the trial is going well!! Thank you for checking back! Best of luck as you continue!!

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  • Andi67
    Andi67 Member Posts: 423
    edited September 2018

    HI Fitz! Not sure you will see this at I am jumping in at the tail end of the thread, but thanks for posting and congratulations on 10 years! I remember you from several years ago and as others mentioned, you gave me hope at the time and continue to do so! So glad the clinical trial is going well. I'll all for Herceptin plus anything that will work so I hope we will be able to follow your progress. You always give such good advice! Glad you are out there enjoying life! 

    Andi

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  • Rachelsedai2
    Rachelsedai2 Member Posts: 3
    edited September 2018

    thank you so much for sharing this! Congratulations to you! May you continued to inspire for many years to come

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