Today they said I need Herceptin now

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dibel
dibel Member Posts: 161
edited June 2014 in HER2+ (Positive) Breast Cancer
Today they said I need Herceptin now
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  • dibel
    dibel Member Posts: 161
    edited January 2008

    I was diagnosed with invasive stage II breast cancer in August with two nodes involved.  Went through 4 AC , 1 Taxol (couldn't tolerate it.) and 3 Taxotere's.  Had my last treatment today. 

    Tumor board met last week and lo and behold, they have now found out from my FSH and pathology report that I am HER positive with a score of 2.2.  Here is where it gets interesting.  Apparently, at 2.2 I previously wouldn't have done Herceptin?  Now, they have changed the guidelines and are recommending 12 months of Herceptin. It seems a little strange that my pathology report has surfaced so late in my treatment.  I'm now facing surgery as planned.  It was to be a lumpectomy but now I think this changes everything for me as far as I am concerned.  I'll be leaning to a double mastectomy.

    Ladies, when did you get your pathology reports?  Was it this late in the treatment plan?  Any thoughts about what I learned today?  I sure appreciate your input.  Would you suggest further opinions?  I might add that I totally trust my treament Dr.s but was just a little shocked that this info didn't appear earlier.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Hi dibel,



    First, I'm not HER2+, but still read a lot about all HER's. I believe there are actually 4 HER's, with HER2/neu the currently treated one.



    It was last week that I read of the potential change in HER2/neu guidelines. The essence is that the powers that be (the medical experts on HER) felt that the upper limit for treatment was too high, excluding some women and men who otherwise may benefit from Herceptin monoclonal antibody treatment. So it has just recently as I understand it been recommended that the score be dropped to allow more patients' to benefit from Herceptin, which may greatly change their clinical course as well as outcome.



    Perhaps you are the first board member who has been advised of this recent news, if it turns out to have been finalized. Always a shock when more is added on, isn't it? Are you going to get a baseline MUGA scan or heart echocardiogram to see where you are starting with your ejection fraction?



    Thanks for putting up this post.

    Tender

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  • dibel
    dibel Member Posts: 161
    edited January 2008

    Well I sort of wish I didn't have a reason to put up the report.  LOL

    Yes, I am having another muga scan to be scheduled soon.  Plus they want to do a bone density test. 

    Thanks for your reply----much appreciated!

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  • dibel
    dibel Member Posts: 161
    edited January 2008

    So should I look at Herceptin as a great benefit to me for a better survival?

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  • Sassa
    Sassa Member Posts: 1,588
    edited January 2008

    Absolutely, it is a great benefit.

    When I was first diagnosed and before my HER2 status was known, my oncologist told me if I was lucky, I would be Her2+ and receive Herceptin. 

    I couldn't understand how being HER2+ could be good news, but the more I have read, the more I realize that Herceptin is a miracle drug.

    So yes, you are also a "lucky" one.

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  • kcq
    kcq Member Posts: 166
    edited January 2008

    Hi dibel---

    I am Her2 +  I found out before chemo started that I would need Herceptin for a year.  I do find it strange that this path report is so late getting to you, but anyway, glad the results finally made it.  I think Herceptin is a great thing.  I had and AWFUL time with AC and Taxol--good news----Herceptin is a breeze!  The only side effects that I have is a little swelling for a couple of days.  So dont compare it to the AC and Taxol--there is NO comparison.  Good luck, sis.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Hi Dibel,



    No one is lucky to have breast cancer, so I understand how even having to talk about one's cancer is viewed as not fortunate. It's an epidemic that still seems not to get enough attention.



    As to HER2+/neu status, well it's a changing phenomenon due to the finding of 50% reduction of recurrence with monoclonal treatment. That's a great stride, so many feel it's prognosis has greatly changed. I think the fact there is an antibody that is effective against a bc cell is a hugh step. Too bad researcher's can't find more on our breast cancer cell surfaces (unique to the bc) to allow more antibodies to be made to take those cells down.



    Good luck, Dibel. It's hard to hear a change of news suggesting yet more drugs...Yet truly, perhaps this will be great therapy in your circumstance.



    All the best to you,

    Tender

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  • dibel
    dibel Member Posts: 161
    edited February 2008

    I sure appreciated your comment regarding you reaction to AC/Taxol.  I had a very difficult time with chemo.  Got my records from the oncologist today and he had written that I didn't tolerate the chemo well.  My question here is--Who Does?????  Can't imagine it's easy for anyone.

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