What are the milestones for HER2 Gals?

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  • mmm5
    mmm5 Member Posts: 1,470
    edited August 2010

    Thanks for sharing your story, I have read about many gals on these boards that achieved NED by going back on Herceptin and/or Herceptin/Tykerb,  I hope and pray that you will find the appropriate treatment and get the medical direction that is right for you. Your story reminds us to remain vigilent, but to enjoy each day that we have instead of worrying constantly as we just DON'T know.

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  • orange1
    orange1 Member Posts: 930
    edited August 2010

    Hi Billiegirl,

    Thanks for posting. What an inspiration.  I'm gonna get me some of that vaccine as soon as its available.  I don't care if I have to rob a bank.

    Lauriesh - so sorry about your recurrence.  As mmm5 said, often the new targeted therapies can get you back to ned and keep you there indefinitely.  I hope this is the case for you too.  I have a former colleagues who's wife has metastatic Her2+ BC and has been doing very well for over ten years.  

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  • TriciaK
    TriciaK Member Posts: 362
    edited August 2010

    Laurie, thanks for adding your own experience but I'm so sorry you're dealing with this recurrance.

    MM5, I read recently that 7-8 years is a danger time too, but as laurie says no one knows for sure, I suspect it's too early to have any definitive results as yet for our group of early stagers that had herceptin.  

    Maybe someone else can add more info?

    Tricia x

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  • BonoboGirrl
    BonoboGirrl Member Posts: 168
    edited August 2010

    One thing is for certain: we don't know what the future holds.  I encounter daily reminders, here on this board and elsewhere, that help me stay focused on living as though I have 30 or more years left to enjoy this life and fulfill my dreams.  That my time here might be shorter is always a possibility, sure, just as it is a possibility for everyone living and breathing (I lost my husband in a car accident 17 years ago). For me, the ultimate milestone is reaching that point of acceptance where I feel confident and relaxed, able to live my life as though it belongs once again to me, not to the cancer or the fear of recurrence. 

    That said, though we can't cleave to the passage of time for our sense of security, the years do help provide a sense of recovery, completion, reclamation even. Ah, if only it were cut and dry. But cancer is a complicated, finicky disease, or so it seems. 

    I know I've read of another woman on these boards whose liver mets were kicked to the curb with Herceptin. How lucky we are to have this drug and the hope that it delivers. 

    Blessings, everyone!  My thoughts are with you all. 

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  • mmm5
    mmm5 Member Posts: 1,470
    edited August 2010

    very well said Anne Marie....thank you! I was not in such a good frame of mind at one year post chemo as you sound to be and that is a blessing for you.  As time passes though I think I am feeling exactly as you mention being able to reclaim a life without cancer on the brain every minute so important and itself such a blessing. 

    Good luck and peace to you and all on this thread! 

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  • TriciaK
    TriciaK Member Posts: 362
    edited August 2010

    Thanks Anne marie,

    Like mmm5, I feel the same, I know this can recurr anytime but really dont dwell on it as I used to.

    What will be will be......

    I just feel it would be great for us early stagers who were fortunate to have herceptin to also have some data to refer to, but think it's far too early for any results as yet!

    Tricia xx

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  • Lilah
    Lilah Member Posts: 4,898
    edited August 2010

    Billiegirl -- can you tell us more about the Her2+ vaccine trial you were in?

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  • BonoboGirrl
    BonoboGirrl Member Posts: 168
    edited August 2010

    I just noticed that you're five years out, Tricia.  That's fantastic!!!! Sorry if you shared that earlier on this thread and I just somehow overlooked it.

     =) 

      

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  • deenah
    deenah Member Posts: 178
    edited August 2010

    This is fascinating information.  Does anyone know i there is similar information on survival rates or later stage HER2+ BC?  In my signature it says I am Stage IIIA, but I am pretty sure I am Stage IIIC based on 2 positive nodes under my breast bone and one in my neck.  I did chemo first though, and now my PET/CT shows node negative (we'll know the true story after my bilateral mx in 2 weeks) now (1 week after my last chemo treatment and after 2 months of weekly Herceptin).  My onc said we were doing the PET/CT to restage me, but I don't know what that means. Right now my next milestones are surgery Sept 9th and then RADS at the end of October for 6 1/2 weeks.  After there it is a big unknown. 

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  • lago
    lago Member Posts: 17,186
    edited August 2010

    I wouldn't pay any attention to stats for HER2+. There isn't enough time for quality stats on treatment with Herceptin and chemo. Seems to me they have been screwing around for 10 years to find the best way to treat HER2+ with Herceptin & Chemo. Just know that it's much much better for us now.

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  • Kheng
    Kheng Member Posts: 26
    edited February 2015

    Aug 2011 Right mastectomy

    ER+100% 3.2 cm, 8/18 nodes, grade 3

    2 x AC, 12 weekly paclitaxel, 25 radiation

    1 mg anastrozole

    5 Jan 2015 :- My tumour is 7 mm IDC , node free, grade 3 ER/PR negative, HER-2 POSITIVE, mastectomy

    There is a hot debate among my breast surgeon, radiation oncologist and medical oncologist

    My breast surgeon says chemotherapy is bad for health

     My medical oncologist says that I have an option as my prognosis is good

    Tomorrow will decide whether to have 12 weekly paclitaxel with herceptin, following 13 cycles of Herceptin every 3 weeks

    Kindly advise me of your situation now, any recurrence without chemotherapy?

    Are you on vegan diet?

    By His Grace

    Kheng

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  • Kheng
    Kheng Member Posts: 26
    edited February 2015

    Aug 2011 - Right mastectomy 

     ER positive 3.2 cm, grade 3, 8/18 nodes

    AC x 2, 12 weekly paclitaxel, 25 radiation, 1 mg anastrozole

     January 2015 - Left mastectomy 7 mm IDC ER-PR-HER-2 POSITIVE, node free, grade 3

     My team of doctors have a hot debate

     My breast surgeon says that chemotherapy is bad for health

     My medical oncologist propose 

     Paclitaxel and Herceptin 12 weekly follow by Herceptin for 13 cycles every 3 weeks

    Kindly share your tumour size and chemotherapy drugs 

    Is there any recurrence?

    Are you a vegan?


    By His Grace

     Kheng

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  • rleepac
    rleepac Member Posts: 755
    edited February 2015

    Kheng: Your breast surgeon says that chemo is 'bad for health'...isn't cancer bad for health? That just seems like a contradictory statement to say that chemo is bad for health. Yes, chemo is purposely injecting toxins into your system but considering the alternative of letting the cancer just keep on growing...I'd say there's not really much of a debate.

    For the record, I haven't started chemo yet because I'm waiting for the Tumor Board's opinion on if it should happen before or after surgery. They meet in 3 days so I'll know soon! However, chemo is definitely part of my treatment plan.

    I know it's not right for everyone - maybe there is some other factor that your breast surgeon is considering?

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  • Bippy625
    Bippy625 Member Posts: 890
    edited February 2015

    fascinating. I confess to not grasping statistics well. Anyone care to give my dx a shot?

    I was er+, pr-, and strongly HER+. Had one node prechemo that was cancererous. Multicentic tumors in R breast only, IDC. After chemo, was NED. Had perjeta and herceptin, and bmx. Still on herceptin till july. Will do tamoxifen, am doing rads now.

    Thanks, great posts

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited March 2015

    I was stage 3a, almost 5cm tumor, ER/PR/HER2 +++, 5/18 positive nodes, grade 2. Treatment was MX with axillary lymph node dissection, chemo - taxotere and carboplatin x 6 every 3 weeks, along with herceptin weekly for 18 weeks, then every three weeks for a year, 35 radiation treatments, and an aromatase inhibitor for 5, possibly 10 years. On the 19th of this month it will be 5 years since diagnosis, no evidence of disease.

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  • Fitz33
    Fitz33 Member Posts: 243
    edited March 2015

    Thanks for posting this LindaKR. Your diagnosis and treatment is so similar to mine. I won't reach the 5 year mark until September but your post gives me hope. Thanks again.

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  • Skoolgirljen
    Skoolgirljen Member Posts: 28
    edited March 2015

    I had my last Herceptin treatment on 2/6. That felt like a huge milestone for me! I can't believe how much I've endured in the last year. I feel strong

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited March 2015

    Next week it will be my 5 year cancerversary - five years from diagnosis

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  • Mommato3
    Mommato3 Member Posts: 633
    edited March 2015

    Congrats Linda! Your post gives me hope. I can't wait to reach my five year ancerversary.

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  • SueNavyBlue
    SueNavyBlue Member Posts: 5
    edited March 2015

    Linda KR, thanks for your post and congratulations!! Mine is same dx, same tx, gives me hope.

    You go, girl!!

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited April 2015

    7 years this year :)

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  • AliceS
    AliceS Member Posts: 98
    edited May 2015

    I, too, am her2+ stage 3a, and like several others who posted, you give me hope. Just finished chemo, radiation, and still on Herceptin. My onco doesn't believe in more scans--which worries me. Will try to be vigilant and get check-ups, but not sure that is enough. Trying to stay busy and positive. Helps to read encouraging news from others so thank you!
    Keep in touch with us--we care.

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2015

    Mine doesn't believe in additional scans either!  Studies show no additional benefit to finding it before there are symptoms.  I've had a couple of bone scans since treatment ended, because I had a new ache, had a biopsy because of a rash.  Let me tell you they get you right in when you have a new lasting pain, or symptom.  But so far NED!!!!  Over 5 years from diagnosis!


     

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