Hey My Her2 Sisters

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  • Rubyluby
    Rubyluby Member Posts: 74
    edited March 2012

    Thank you for sharing your stories, ladies.

    Reaching the three year mark (dated from my surgery) in January this year was a hugely significant milestone for me too. It was the moment I stopped holding my breath. Strangely, it also seems to have been the moment when I started to lose the chemo weight I gained during treatment (37 pounds worth in total, eeeek!!!) which has been the bane of my life. I have now lost 17 pounds since January (through eating roughly 1500 calories a day and exercising 4 to 6 hours per week). When I followed this regimen before I just couldnt seem to shift the weight, so I am assuming that whatever was put out of whack by chemo and Herceptin has healed, rebalanced or restored itself. I am looking forward to being the normal weight I was all my adult life again and to being able to wear that wardrobe of clothes quietly waiting for me...! Though there are plenty of theories, it seems nobody completely understands why women so commonly gain weight during BC treatment.

    Love and blessings to you all,

    Lucy


    Diagnosis: 1/13/2009, IDC, <1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2+

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  • HopingforaCure
    HopingforaCure Member Posts: 163
    edited March 2012

    Hi there.  It's 5 years for me this month.  After diagnosis, had mastectomy, chemo, herceptin and radiation.  Will finish up 5 years of Tamoxifen in Nov. and then will switch to an AI.  Eating healthy, exercising and enjoying each day.  Feeling good!

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  • NonniO
    NonniO Member Posts: 31
    edited March 2012

    Three years for me, as of January!  Looking forward to reconstruction although I still haven't  decided on which kind or even which plastic surgeon!  I'm a real procrastinator -  but I'm thrilled to have made it this far.

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  • PoliceWife84
    PoliceWife84 Member Posts: 136
    edited March 2012

    Hi Friends,

    It will be 2 years for me May 28th. My birthday is May 26th, so I could not ask for a more precious gift! God Bless!

    Love,

    Brandi

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  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited March 2012

    Hey Guys!! I know so many of you!!!Caya Lkc Marejo Lexis...

    I'm 7 years 3 1/2 months out !!



    Hugs to all,

    M

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    Hi, I am hoping someone here can help me out. When I had my biopsy it was IDC er/pr positive and Her2-. Now that I got the results back from my lumpectomy they found ILC er/pr positive, but what I don't understand is Her2/neu:ASCO/CAP score 2/3 then below it says they are sending that tissue out for her2/neu testing to a lab in California. I am confused. Is it posible when you have 2 different types of cancer the her2 is also different. I really don't know what the 2/3 means either.

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  • traceyz
    traceyz Member Posts: 745
    edited March 2012

    Mary Jo!

    What a GREAT thread!! I am 4 years out and counting!! I still get nervous about every little ache and pain but not NEARLY as bad as before! We are ALL living breathing success stories!!! YAAAAAAY US!!!!!!!!!

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  • sheila888
    sheila888 Member Posts: 25,634
    edited March 2012

    Dianarose...Usually 2/3 means the grade of the cancer.....which is grade 2...

    I'm not sure if it's related to HER+

    You should call your DR and ask the question WHY or how - turned to + (if)

    Sheila

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  • traceyz
    traceyz Member Posts: 745
    edited March 2012

    Mary Jo!

    What a GREAT thread!! I am 4 years out and counting!! I still get nervous about every little ache and pain but not NEARLY as bad as before! We are ALL living breathing success stories!!! YAAAAAAY US!!!!!!!!!

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  • Imsevenyearsout
    Imsevenyearsout Member Posts: 9
    edited April 2012

    I'm seven years out this Month!  THANK YOU HERCEPTIN

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  • ginger_mea
    ginger_mea Member Posts: 264
    edited April 2012

    Mary Jo thanks for the thread of hope for all!  This first year after completeing chemo, rads etc... I am finding the hardest to just relax and move forward so this makes me feel better.

    I finished a year of Herceptin 2 weeks ago, am on AI's for 5 years, I to was wondering when you start counting?  I guess I will ask my ONC next visit. 

    Ginger M. 

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  • jo50
    jo50 Member Posts: 75
    edited April 2012

    Hi all. Diagnosed April 2004, stage 2A, 1/11 nodes. Lumpectomy, chemo, rads and a year of Herceptin. So I'm more or less 8 years. Was on trial to try to get Herceptin but wasn't on those arms of trial (random selection). However, trial was so successful it closed early and I started Herceptin about 5 months after chemo finished. I just had a new cancer in same breast (DCIS, high grade, ER-/PR-), so am about 4 weeks out from mastectomy. However, since general feeling seems to be this is a new primary and unrelated to first go-round,  I'm taking my 8 years as good news to share with everyone. Good luck and good health to all.

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited April 2012

    I'm one year and 6 months out. Feels like 'no women's land'...until the three year mark

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited April 2012

    I'm the sad story - I only made it four months past treatment when mets were found.  I'm thinking they were there all along and nobody knew.  

    Lovely to hear so many success stories! 

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  • ginger_mea
    ginger_mea Member Posts: 264
    edited April 2012

    CoolBreeze - my heart goes out to you, HUGS.... stay strong, praying for good things Ginger M.

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  • nora_az
    nora_az Member Posts: 720
    edited April 2012

    1 1/2 years out since the very beginning. Going in for a hysterectomy/ooph May 22. I also have a couple of lung nodules my onc doesn't like and wants them out of there. The initial biopsy said they found no cancer in the sample they took. I personally think my onc is still suspicious and that's why he's so keen to get it out.

    We shall see.

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  • mmm5
    mmm5 Member Posts: 1,470
    edited April 2012

    HI CoolBreeze

    It's good to have you over here too! I saw a post from a newbie the other day regarding her Mom and the "liver" etc and I really wanted to reach out but hesitated to post on Stage IV, I was sorry you had a bad day and wanted to let you know I know of 2 BC gals in our clinic that have had mets to live for last 3 and 4 years so they can be in check.

    M 

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  • lkc
    lkc Member Posts: 1,203
    edited April 2012

    6 yrs 11.5 months out from a stage IIIC her Pos BC!!!

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  • Ossa
    Ossa Member Posts: 919
    edited April 2012

    Hi Her2 sisters.. Wondering if anyone have had to pospone Herceptin tyreatment b/c  of heart fuction dropping to low? Had my muga scan last week and foun out today my heart function had dropped 11% to 50%  ( My Firt muga was at 65%, second 67% Third 61% and now 50%.. Will get another scan in three weeks to see if heart function is back up,, if not no moe Herceptin.. Really want the last five treatments....)

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  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited April 2012

    It is great to see positive stories.  I'm 18 months out from surgery and doing ok.  Still not back to my "normal" self, but after bc what's normal? lol

    I finished Herceptin in Jan this year, and was glad to finished with infusions.  While Herceptin was very very easy for me - I found the last 3 or 4 treatments a bit harder - with diahorrea and tiredness. 

    Had a serious scare a couple of weeks ago when after 7 weeks of bad pain in my lower back my doc sent me for a bone scan.  Luckily (?) it's not mets but degenerative arthritis.  He and I are fairly convinced it's the Arimidex causing this (bone scan 18 months ago was clear) so will see my onc next month to see what the alternative is.

    I had gotten myself to the stage of not thinking about a recurrance (much), but I guess we all will worry about it during the first 3 years or so.  I feel pretty positive that I'll be in the group that Herceptin works its magic for :-)

    Ossa - I can't help you with heart function - my heart function stayed at around 67 the whole way through.  Good luck to you - I hope you get to finish - although 5 treatments short is probably not the end of the world xoxo

    Trish

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited April 2012
    Ossa - check out this thread - these gals can give you some input:  Herceptin heart attack 
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  • Ossa
    Ossa Member Posts: 919
    edited April 2012

    Thanks ladies..

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited April 2012

    7 years, yaaaahoooooo! 

    I had a recurrence whilst still on Herceptin.

    Surgery in November, 25 x rads finished in February and now I'm back to living my life to it's full potential.

    Long may it continue.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Great thread, so wonderful to see so many posts.

    I am almost 4 years this August. So far so good.

    It would be interesting to see what types of chemo you ladies had. I had Taxotere/Carboplatin and Herceptin.

    Thanks,

    tucker

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Ossa,

    My doc recommends going into herceptin with co-enzyme Q10 to help protect the heart.

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited April 2012

    tucker - did your doc ever explain how the co-enzyme Q10 protects the heart cells from oxidative stress and death without inadvertantly protecting any cancer cells from the same?  (sorry for the thread derail, feel free to PM me or post on the Herceptin Heart attack thread where I have just posted the same question).  Thanks!!! 

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  • Joanne58
    Joanne58 Member Posts: 1,117
    edited April 2012

    Ossa--my muga dropped 10 points before my last 2 Her. tx.  It was still in the normal range (65). but my onc did not like the drop and told me no more Herc.  She claims she believes in the current Herc. studies regarding 6 mos. vrs. 12 mos. of tx.: 6 mos. having the same benefit and less chance for heart issues. My gut told me to trust her judgment.

    Hope you have peace of mind in what ever you and your onc. decide is best.  Heaven knows, we all need that important peace of mind! 

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  • ElaineM
    ElaineM Member Posts: 81
    edited May 2012

    Hi, I am glad to see you are doing well. Congratulations !!!!!!!!

    I was diagnosed January, 1999, so you can see that I am still alive and kicking.

    Take good care of yourself.

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  • Fitz33
    Fitz33 Member Posts: 243
    edited May 2012

    Thank you all for sharing with the rest of us. I'm one year now from chemo and surgery and recently completed my year of Herceptin. I had been going by the old modal of the most likely time for recurrance was 2 to 3 years but mmy onc just told me it's now 2 years. I'm ecstatic! They have a hard time keeping up with all of the studies and she said by the time the latest study comes out it's already old but they're seeing such wonderful results with Herceptin that it's now 2 years, not meaning it won't recur after that but the most occurring time is 2 yrs. I can't wait to be like so many of you with a few or more years. Congratulations to all of you.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited May 2012

    Hi Fitz33

    Perhaps the 2 year point has most chance of reoccuring because at year 1, most people are still on Herceptin or just finishing? They used to give herceptin for 2 years. I wonder if for these patients, the 3 year point was their riskiest time. Mmmm....

    Liz

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