Chemo failed

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    PET scan results: no spread beyond the skin! Still in breast and lymph nodes, chemo wasn't working (it did have an initial debulking effect but stopped there) but great news that it isn't seen in any other organs! Next step: immunotherapy trial :) I got accepted!

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    Hooray!!!! Great news indeed! The organs are clean, you can continue from there.

    Is it ok to ask you a few questions about immunetherapy? They want me to participate in a stemcell trial btu I was reading about the immunetherapy and was wondering which once would be better. For the time being I have to do the third chemo tomorrow.


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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    MoreShoes, I am just learning about it myself but I will post more about it as I do!


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  • LMN
    LMN Member Posts: 35
    edited January 2016

    thanks Meadow for welcoming me!

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  • Geeper
    Geeper Member Posts: 164
    edited January 2016

    Hi Notdoneyet- I have been praying for you. I am so glad to hear that there is no spread beyond the skin and excited that you got accepted to have an immunotherapy trial. Sending you a virtual big hug.

    Hi LMN- Welcome to the board! Everyone here is so supportive, they've all helped me tremondously. I look forward to getting to know you :) 

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  • Meadow
    Meadow Member Posts: 2,007
    edited January 2016

    Notdoneyet, so thankful for good news. I am so very glad.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited January 2016

    The BCO IBC community is pretty much all on deck here, so you're in good hands Notdoneyet. Good luck with the immunotherapy. 


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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    Bon, thank you very much for the info. I know it's a cruel treatment. In the next three weeks I'll get an appt with dr S. discussing about immuno- and stemcelltherapy

    Notdoneyet, I'll be looking forward to your updates. We have a looooooong and difficult way to go.

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Hey all, I changed my user name (and tried to update my signature but it won't let me right now), just wanted to let you know that it's still me: I am going to be done with this at some point and feeling jinxed by the screen name Notdoneyet.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    Mamiya, superstitious or not, we're going to fight! Good luck with the immunotherapy. In the next weeks I'll find out if and which trial I can participate.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited January 2016

    Mamiya, great, I can get that user name now.

    PS: my chemo failed as well, but only in that the tumors were still active at the end of six three-weekly chemo treatments. Hopefully the surgery and radiation did the trick!


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  • Meadow
    Meadow Member Posts: 2,007
    edited January 2016

    (((Mamiya)))

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Haha Traveltext, go for it. I initially meant it as in "not done living and being" but then it seemed to turn into "never ending treatment and no clear finish lines" so it had to go. I feel like I am making a fresh start. No idea if the immunotherapy really is the great white hope but now that I have skin mets I can't have surgery until that is under control. The possibility of rads before surgery still exists if the trial doesn't work, we'll see!

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Bon, crap, I forgot to ask. I will see him again next week and I will ask.

    I did a day of tests today, two more biopsies, blood, urine, two EKGs, it was a blast (not really). Thursday I get a fresh CT and bone scan and then a week from Wednesday we are off to the races with the first infusion. Hoping for no allergic reactions and hoping it works!!!!

    I am so nervous that I haven't had chemo since December 28th. First immunotherapy 3 February. Yikes. On the other hand, I feel great

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    Mamiya, lots and lots of luck! What medicines are you going to use and what regime? Next week I have appointments about discussing over the stem cells or immunotherapy.


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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    The trial is here: https://clinicaltrials.gov/ct2/show/NCT02536794?te...


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