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Calling all TNs

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Comments

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited February 2017

    Congrats AMW and Gina!

  • vlh
    vlh Member Posts: 773
    edited February 2017

    Well, shoot, Angtee15, I reviewed the trial again and, as Tulipsanddaffodils noted, it looks like you have a 50% chance of getting Cytoxan. Although most of my adverse side effects may well have been related to the Adriamyicin rather than the Cytoxan, I probably should have been in assisted living for 3-4 weeks I was so debilitated. I was also neutropenic after 3 of my 4 AC treatments. Further, another six months of exposure to a drug that might give me leukemia and will probably keep me bald for many more months has little appeal. I really wish they'd confined the trial to the alpha peptide vaccine. Very disappointing.

    Lyn


  • gmmiph
    gmmiph Member Posts: 662
    edited February 2017

    Thanks Amw and Lovemyvizsla.


  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    Congrats Amw and gmmiph on finishing chemo. I did my last Taxol on Tuesday. Yay! Feels so great after two months of A/C and three months of Taxol.

    Now just have to meet with my surgeon tomorrow to schedule a date for surgery. Probably sometime late in March.

    I left you a reply about nail problems in the Taxol thread, VLH. Hope yours don't get any worse.

    Trish

  • vlh
    vlh Member Posts: 773
    edited February 2017

    Thanks, Trish!

    Lyn

  • gmmiph
    gmmiph Member Posts: 662
    edited February 2017

    Thanks Trish and wishing youthe best of luck on your surgery!

  • DiV
    DiV Member Posts: 148
    edited February 2017

    Congratulations gmmiph and amw on finishing chemo!

    I finished chemo and radiation on February 10. I've had the worse sore throat of my life from treatment. Yesterday was the first day i could eat solid food. I still have no voice it's just a whisper. The radiation burns are healing and itching like crazy so that's a good sign. Surgery scheduled for march 20.

  • trishyla
    trishyla Member Posts: 698
    edited February 2017

    Glad yo hear you're finally able to eat solid food again, DiV. You've already been through so much, with so much more to come, that every small improvement must be something to celebrate.

    Sending gentle hugs and wishes for a relaxing and healing next four weeks before your surgery.

    Trish

  • DiV
    DiV Member Posts: 148
    edited February 2017

    Trishyla thank you so much! Gotta tell you this. I have a cat named Shyla too funny! Yes was never so happy to be able to eat. Praying my voice comes back soon.

    Everyone has been so supportive i appreciate all of you for that!

  • amw5
    amw5 Member Posts: 74
    edited February 2017

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

  • Angtee15
    Angtee15 Member Posts: 72
    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!

  • aterry
    aterry Member Posts: 142
    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!

  • meadow
    meadow Member Posts: 998
    edited February 2017

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

  • gmmiph
    gmmiph Member Posts: 662
    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


  • Shopgal2
    Shopgal2 Member Posts: 594
    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.

  • 6feetover
    6feetover Member Posts: 97
    edited February 2017

    Oh, Shopgal! *BIG HUGS*!!!Sad

  • Cathytoo
    Cathytoo Member Posts: 394
    edited February 2017

    amw5 and gmmiph...BIG CONGRATULATIONS

  • vlh
    vlh Member Posts: 773
    edited February 2017

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

    Lyn

  • BanR
    BanR Member Posts: 238
    edited February 2017

    checking in after 4 long months!

    missed reading all the posts. hope everyone is doing good

    hugs!!

  • amw5
    amw5 Member Posts: 74
    edited February 2017

    Thx ladies. (((hugs)))

  • Cathytoo
    Cathytoo Member Posts: 394
    edited February 2017

    Hi BanR....so good to hear from you and know you are well. Keep going strong❤️

  • gmmiph
    gmmiph Member Posts: 662
    edited February 2017

    Thanks for the congratulations ladies.

  • amw5
    amw5 Member Posts: 74
    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!

  • SuprSurvivr
    SuprSurvivr Member Posts: 104
    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!

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited March 2017

    yay for you, AMW! More taxol rounds?

  • Valstim52
    Valstim52 Member Posts: 833
    edited March 2017

    Awesome news Amw5. hugs to you

  • amw5
    amw5 Member Posts: 74
    edited March 2017

    Thx so much ladies.

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

  • Momy4ever
    Momy4ever Member Posts: 21
    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 😊

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

  • amw5
    amw5 Member Posts: 74
    edited March 2017

    Thx Momy4ever.

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    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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