Calling all TNs

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  • amw5
    amw5 Member Posts: 189
    edited February 2017

    Thx ladies. It feels good to have that chapter done. :)

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  • Angtee15
    Angtee15 Member Posts: 209
    edited February 2017

    Congrats ladies on finishing chemo!!! High fives and fist bumps all around!

    Tulips & VLH--there is no placebo in this trial. Everyone gets the vaccine. You are getting the high dose or low dose depending on what arm you are randomized into. The Cytoxan gave me pause too. But I was told you get just one low dose of Cytoxan a few days before the first vaccine injection and it's not at a chemo-level dose that would cause hair loss. I guess the objective for administering Cytoxan is to get any bad immune cells out of the way before you get the first dose of the vaccine.

    Tulips--it's an injection under your skin and nothing like an infusion. So far the biggest challenge for me is just getting to the center and back since I live in Chicago and the nearest trial site is in Detroit.

    Feel free to PM me!

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  • aterry
    aterry Member Posts: 290
    edited February 2017

    Angtee, thanks for the information about the trial and your experiences. I always want to learn more about what's on the horizon. So many of the research efforts one reads about are still pre-clinical--promising but probably won't help any of us since clinical application is so far away. Still bless their hearts for the tedious lab work that moves the field forward and leads to actual patient based trials such as yours!

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  • Meadow
    Meadow Member Posts: 2,007
    edited February 2017

    gmmiph, congratulations! Very proud of you! Happy dance for sure!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2017

    Meadow, Div and Angtee,

    Thank you for the congrats and kind words. Those words of support and encouragement sure help me to go on knowing i am not alone on this journey.

    I am always including all of you in my prayers and that in whatever condition each of you may be in, God will keep you safe and protected.

    Take care.

    Love,

    Gina


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  • Shopgal2
    Shopgal2 Member Posts: 649
    edited February 2017

    ladies congrats on finishing chemo. Very happy for you all

    Today I am 1 year post treatment. So 4 more years to go. I am happy sad today as my mom died 6 months agotoday. I just miss her a lot. I kept hearing her voice in my head all day telling by me that she loved me more than life itself. She would say that to me all thru my chemo treatments. I would just want to have her hug me now and tell me that she was proud of me.

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  • 6feetover
    6feetover Member Posts: 320
    edited February 2017

    Oh, Shopgal! *BIG HUGS*!!!

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited February 2017

    amw5 and gmmiph...BIG CONGRATULATIONS

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  • VLH
    VLH Member Posts: 1,258
    edited February 2017

    Thanks for the clarification, Angtee15. Do they disclose any side effects from earlier patients?

    Lyn

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  • BanR
    BanR Member Posts: 289
    edited February 2017

    checking in after 4 long months!

    missed reading all the posts. hope everyone is doing good

    hugs!!

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  • amw5
    amw5 Member Posts: 189
    edited February 2017

    Thx ladies. (((hugs)))

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited February 2017

    Hi BanR....so good to hear from you and know you are well. Keep going strongโค๏ธ

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2017

    Thanks for the congratulations ladies.

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  • amw5
    amw5 Member Posts: 189
    edited February 2017

    On October 25, 2016, the lump in my breast was 4.5 cm.

    On January 3, 2017, the lump in my breast was 2.3 cm (after four rounds of A/C).

    On February 27 2017, the lump in my breast was 1.9 cm (after four rounds of Taxol).

    Thank God!

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  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited March 2017

    Amw5 - You go, girl!! That's awesome news! Keep strong before your surgery. Build muscle as that will help you heal. Pray as that will give you strength. Keep us up to date on your progress!

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited March 2017

    yay for you, AMW! More taxol rounds?

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited March 2017

    Awesome news Amw5. hugs to you

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  • amw5
    amw5 Member Posts: 189
    edited March 2017

    Thx so much ladies.

    LoveMyVizsla - I did dense doses, so I'm finished with chemotherapy (waiting on surgery now).

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  • Momy4ever
    Momy4ever Member Posts: 30
    edited March 2017

    suprsurvivr, just curious what have you decide regarding your next treatment, did you decide to go for platinum chemo or Xeloda, I have finished yesterday my first cycle of Xeloda and so far so good. No side effects till now ๐Ÿ˜Š

    Amw5, great news. Wish you all the best in your surgery & recovery

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  • amw5
    amw5 Member Posts: 189
    edited March 2017

    Thx Momy4ever.

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  • lovesgreenthings
    lovesgreenthings Member Posts: 107
    edited March 2017

    Angtee15, saw your trial is in Detroit, will you share what hospital system? I live in SE MI and am interested in knowing more about this. Thanks!


    Anne

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  • ALHusband
    ALHusband Member Posts: 344
    edited March 2017

    Just stopped by to see if there was any update on Cocker. So happy to see all the good news from the others! Good news is good! Hope everyone is doing well. Cocker (Annie), you're on my mind! Love to all! Mike

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2017

    Ladies with a bit of luck I might feel better next week, no chemo. It might take me all day but I will post. Your love and support, along with my wonderful family has kept me sane and kept me going. Still on the grass side of life, so far. love you Annie xxxxx

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2017

    Cocker Annie,

    What a surprise! That's great!!!

    Really happy for you!

    image

    image

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  • 6feetover
    6feetover Member Posts: 320
    edited March 2017

    {{{{{{{ANNIE}}}}}}}

    SO glad to see you!!!

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  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited March 2017

    Hi, Momy4ever - fortunately or unfortunately, the decision on whether to do Xeloda or a platinum based drug will be out of my hands. That choice will be made by the computer randomized for the clinical trial. If anyone wants more info on this trial, go to clinicaltrials.gov, EA1131 or NCT02445391. It is specifically for TN without full pCR after neoadjuvant chemo. I went from 3.8cm to 1cm after AC+T, but still had 2mm of cancer left. The trial stops at 1cm, so I was on the cusp. I hope to hear soon, as the platinum based is 12 weeks and Xeloda is 18 weeks. I'll be finishing up with rads Mar 13, and the earliest you can start is two weeks after (latest you can start is 24 weeks after surgery).

    Annie - good to hear you are holding strong! ๐ŸŽ‰๐Ÿ™๐Ÿป

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited March 2017

    HI ANNIE!! Wonderful to hear from you! Keep feeling better and better!

    Congrats to those finishing treatments and welcome to the newbies here!

    Meadow, - how are you doing?

    I dont post much, but I read and think of all here, sending BE WELL wishes to all of my cohorts on these boards!

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  • HarleyDream
    HarleyDream Member Posts: 17
    edited March 2017

    Hi All!

    I love the happy banter on this thread!! I have completed all of my necessary treatment and am now doing "preventative" Xeloda treatment for 8 cycles. My tumor was 5.7 cm half on chest wall and half in breast. It took only 45 days from when I found a hard place on my breast to get to that size! After 4 doses of AC and 12 weekly doses of Taxol, I thought it had shrunk because it was gone from the chest wall. At surgery it was found to be 6.1 cm in my breast, but it had completely slid off the chest wall. How crazy is that! Nodes and margins were clear. So, since my tumor grew, I am doing preventative measures. I am 5 days into the Xeloda at 3000 mg a day at 2 weeks on and 1 week off constituting one cycle.

    I was very healthy and in-shape when this happened to me and for the most part ate very clean. It's a mean and nasty disease that really took me by surprise! I'm sorry that we have all found ourselves in the TNBC club, but I guess it's just one of those tough obstacles in life that we have to face and conquer when it comes our way! I look forward to sharing positive thoughts with y'all on this thread!

    Tonight the TNBC support group that I am in in my city are all meeting for dinner to celebrate TNBC day. I wish you ALL WELL on this day that celebrates us and our struggles!

    -HarleyDream (My username is my 2 horses squished together!๐Ÿด๐Ÿด

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  • amw5
    amw5 Member Posts: 189
    edited March 2017

    It's so good to hear from you Annie. (((hugs)))

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  • DiV
    DiV Member Posts: 231
    edited March 2017

    Annie great news!

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