Fill Out Your Profile to share more about you. Learn more...

Looking for Her2 Positive survivor stories

Options
1356737

Comments

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited August 2015
    Options

    Thanks for the encouragement ladies. I am on a 3 week vacation from femara at my chemo doc's reccomendation to see if it is causing the joint pain. If it is, she will switch me to a different AI. Limping through life at the moment. Love, Jean

  • rozem
    rozem Member Posts: 749
    edited August 2015
    Options

    im 4 years out this month!!!! Discovered BCO while going through treatment and the ladies I met here were my lifeline!

    I know a her2 pos girl diagnosed same time as me with 11 pos nodes and she's also doing great

    There is hope!

  • wellspring
    wellspring Member Posts: 5
    edited August 2015
    Options

    Thanks for posting her story. I'm newly diagnosed with BC and scared. I'm always looking for positive survival stories that will lift me up and give me and extra impulse to fight this.

  • CassieCat
    CassieCat Member Posts: 863
    edited August 2015
    Options

    rozem, congrats! That is terrific to read. :)

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited August 2015
    Options

    Well as it turns out, the Femara wasn't causing my joint and muscle pain. After 2 weeks off femara the pain hadn't changed at all so now I'm back on it. Pain vs a relapse, I'll deal with the pain. I am hoping some of it may be due to the herceptin / perjeta I'm still getting through October. Being ER+, I'm terrified of soy. Used a little soy sauce today and am now unhappy even though my chemo nurse said soy sauce is OK. Just avoid tofu and soy milk. I just don't want to get careless. Any thoughts about this ladies? Love, Jean

  • moderators
    moderators Posts: 8,052
    edited August 2015
    Options

    Wellspring-

    We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we hope you find the support and encouragement you need to fight this disease! We know it can be overwhelming at times, but you can do this!

    The Mods

  • CassieCat
    CassieCat Member Posts: 863
    edited August 2015
    Options

    Jean, like kayb said, I'm avoiding soy protein isolate altogether now, and my daughter is as well. I will occasionally have tofu or edamame, but that's about all I was doing before BC, too. I consumed a lot of the soy protein isolate prior to BC - protein bars, fake vegetarian "meats", etc. No more of that in my diet anymore!

  • lago
    lago Member Posts: 11,653
    edited August 2015
    Options

    August 31, 2015

    5 years NED means
    5 years Cancer Free
    Today I celebrate life for me!

    linky

  • jw12
    jw12 Member Posts: 5
    edited September 2015
    Options

    wow to go lago! High 5 😉




  • girlstrong
    girlstrong Member Posts: 299
    edited September 2015
    Options
    1. yeah Lago!!!!!!! I thank you for your ongoing support and encouragement to us all....this journey is an emotional roller coaster!!! Winking
  • sydneybased
    sydneybased Member Posts: 25
    edited September 2015
    Options

    Hi there... I reach 5 years post-diagnosis on 5th October. Nearly there!

  • lago
    lago Member Posts: 11,653
    edited September 2015
    Options

    Awesome Sydneybase! That was the day I had my 1st chemo and no SE. Good day for everyone.

  • wabals
    wabals Member Posts: 192
    edited September 2015
    Options

    Pbrain

    At stage 1 why did you not just get taxol and herceptin which is standard of care

  • Fitz33
    Fitz33 Member Posts: 123
    edited September 2015
    Options
    I'm 5 years since diagnosis, been on Arimidex or rather the generic Anastrazole for 4 years now. I was told at the beginning of the AI to take 6 months at a time and try to get through the SEs and that's worked for me. I've had acupuncture for joint pain and that's been helping enormously, I'm pain free. I stay away from soy products if I know there is soy in them, also never eat sushi or sprouts. I have lymphedema but think the acupuncture is helping with that too. I should wear my sleeve but it's too hot.
    zjrosenthal, don't worry about not having the total 18 Herceptin, I think I was one short and I had delays along the way, you've had most of them and that should be OK.
    Congrats to others who have made this journey, it's not an easy one but there is a lot of life to live yet.
  • lago
    lago Member Posts: 11,653
    edited September 2015
    Options

    Fitz33 I too have lymphedema but wear my sleeve all the time. I also exercise daily. In 5 years I had one small swell event and that was my fault. I carried some groceries that were to heavy on a hot and humid day. It went down in a few days. I used to have a medi95 sleeve and it was hot. I new wear a Juzo soft sleeve 2002. Much more comfortable and not as hot.

  • Slainte
    Slainte Member Posts: 55
    edited September 2015
    Options
    Hi!

    I am five years cancer free this month. I don't check in all that often now, but I remember what hope it gave me during my chemo to see people sign in and say how many years they have been cancer free . When you don't hear from people it just means they are off living theirs lives and cancer is no longer the center of that life !! Hang in there , each day gets a bit easier.

    Take Care,
    Christine
  • lago
    lago Member Posts: 11,653
    edited September 2015
    Options

    Awesome Christine!

  • Kareon
    Kareon Member Posts: 1
    edited September 2015
    Options

    I am a very private person but I decided  If I can give hope to someone today then it is my time to write. I was diagnosed Nov 2012. Stage III c.  10cm, her2 positive, 17/30 lymph nodes positive. FEC+ herceptin, taxol, radiation plus zoloda chemo, DTM1, right mastectomy, DIEP flap reconstruction, Tykerb- targeted therapy since April 2013.   I'm still kicking and loving life!!

  • jw12
    jw12 Member Posts: 5
    edited September 2015
    Options

    Thank you Kareon! Made me and I am sure many of us smile.. Congrats!

  • lago
    lago Member Posts: 11,653
    edited September 2015
    Options

    Wow Kareon. Happy for you. Keep it going and of course keep enjoying life!

  • specialk
    specialk Member Posts: 9,226
    edited September 2015
    Options

    Karen - yay for you!

    My five years from diagnosis is this weekend!

  • moderators
    moderators Posts: 8,052
    edited September 2015
    Options

    Kareon-

    Thank you so much for sharing! We love to hear stories like yours, and know the other members of the community do as well.

    The Mods

  • Pbrain
    Pbrain Member Posts: 773
    edited September 2015
    Options

    Me--Stage 1, Her 2 +++, no need for FISH testing my oncologist told me. The tumor was a Her 2 producing machine. I'm three years out from diagnosis :-)

  • jw12
    jw12 Member Posts: 5
    edited October 2015
    Options

    Way to go PBrain. Thanks for sharing! ThumbsUp

  • geewhiz
    geewhiz Member Posts: 671
    edited October 2015
    Options

    6 years todayThumbsUp

  • specialk
    specialk Member Posts: 9,226
    edited October 2015
    Options

    geewhiz and pbrain - yay!

  • lago
    lago Member Posts: 11,653
    edited October 2015
    Options

    pbrain

    geewhiz

    YAY
    !

  • nurseronda10
    nurseronda10 Member Posts: 109
    edited October 2015
    Options

    Haven't been on here in forever. Celebrated my 5 years in August. Been living and loving life:)))

  • lago
    lago Member Posts: 11,653
    edited October 2015
    Options

    ThumbsUp Nurseronda! We celebrated 5 years the same time month. August 31st for me.

  • fightinhrd123
    fightinhrd123 Member Posts: 21
    edited October 2015
    Options

    I might have posted on this already but figured it wouldnt hurt to post again. Diagnosed May 29th 2008 2cm tumor at least 2 nodes. No recurrence since.