HER2 Positive and 10years out?

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in High Risk for Breast Cancer

Hi,

This is such a huge website my question will probably get lost.  I don't know if this has already been posted so here goes:

Are there any HER2 positive women out there who are doing well at the 10 year mark?  Have you had a recurrence?  Are you, or did you, take Herceptin?  If you don't mind sharing some details I would like to hear from you!

Thank you, in advance.    

 Dianne - tuckertwo

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited September 2009

    Dianne,

    I think (I'm not sure) that Herceptin didn't become approved for the treatment of early-stage breast cancer until 2005, so you may not hear from a lot of women who had it ten years ago unless they were in the trials.  I think that's right, and I do recall "talking" to a few on these boards who participated in the trials and are still doing well.  Herceptin is widely regarded to have made HER-2 cancer, once considered one of the most aggressive breast cancers, to be treatable, and curable in many cases.  I sure hope it's as good as they say.  I can tell you that I didn't have any problems with Herceptin.  I hope that helps.

    Bobbie

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  • KorynH
    KorynH Member Posts: 301
    edited September 2009

    I am still on Herceptin (4 months to go) but I too would be happy to hear of some women out there, even if just 4 years recurrence free!  I am allergic to Tamoxifen so even though am er+/pr+ I test post-menopausal now that I have had chemo fry my ovaries.  He said he is fine with me not taking anything as long as I don't have a period. Hmmmm....has anyone else ever heard this? He cited some European studies which he said our FDA doesn't recognize but are just as valid in supporting this.

    Here's what Tamoxifen did to me! Swelling and itching like crazy! (lasted 24 hours!) This went on for 3 months and then I said no more and so did my doctor when I had an airway constriction reaction as well! So I pray the Herceptin and chemo did their jobs.

    I would also like to hear from Her2+ women who were treated w/ Herceptin and are here years later to talk about it. I am hoping that will be ME a few years from now!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    Hi KorynH, I'm glad to hear from you. We are almost the same time frame with our dx and tx.  (I have to do my profile- I will type it here).  There are some women who are 5 years + on the her2 support forum - have you visited that site?  I guess the main problem is these women didn't know about her2+ 10 years ago?  Which makes me wonder how the oncs can give me a 10year prognosis.  Based on hope & herceptin, I guess? I have a friend who talked to a woman who had her2+ 20 years ago and did not do herceptin!!  I didn't ask if she had a recurrence (hate that word) or how she found out now that she is her2+.  I am trying to keep my immune sytem in top shape - eating well & taking good antioxidants...exercising.  But I worry about worrying and panic attacks.  They can't be good for anyone but how on earth do you deal with this diagnosis?  What do you do to keep a good outlook?

    My diagnosis - and the day my life changed:

    August 27, 2008: 50% IDC and 50% DCIS, right breast only, 2.1 cm tumour, grade 3.  Weakly ER positive, PR negative, Her2 positive +++.  Negative lymph nodes, no vascular invasion. What I did:  double mastectomy, right modified mastectomy, left simple mastectomy on Sept. 9, 2008.  Began Taxotere/Carboplatin/Herceptin mid Nov. 08. Finished 5.5 rounds March, 2009. Still doing herceptin until Oct. 8, 2009. So far so good.

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  • jeanz02
    jeanz02 Member Posts: 1
    edited September 2009

    Hi Dianne,  Today is my 9 year anniversary from date of diagnosis.  My cancer was HER2+++, three tumors totaling 3.7cm, 4 + lymph nodes, Stage 2b. I am told there is a new staging method and that I would now be considered stage 3a.... What's THAT about?? Anyway, I had TRAM reconstruction and then I had  4 A/C chemo followed by 4 Taxotere then 35 RADS.  I was diagnosed in 2000 and Herceptin was not available to me then, it was still in trials, but I think by the next year it was being used.  And today is my NINE NINE NINE year anniversary!  I am still cancer free.  If you have any more questions, I'd be happy to help.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2009

    Hi KorynH.... I am still ned after 4 years and 5 months.

    I had 52 rounds of Herceptin with Taxol. I was lucky because its been approved for early stage BC I think a month or 2 after I was DX. I'm on Femara since March 2006.

    PS: 4 rounds of Taxol.

    I am a living proof so far.

    Good Luck to you.

    Cool Sheila

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