2years vs. 1 of Herceptin tx

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elmcity69
elmcity69 Member Posts: 998
edited June 2014 in HER2+ (Positive) Breast Cancer

Hey ladies. I've been pondering the dilemma we high risk gals face regarding Herceptin. My onc states that one year is protocol, however, he also admits that studies on 2year dosing are promising, but "not enough have been done". Is there a magic number? Are there oncologists who will break protocol and dose for 2 years?

I'm reflecting on the inconsistency of the whole system. There is a trial @ Johns Hopkins for high risk HER2+ women; however, it will be a logistical and financial nightmare for my family, which is why I'm not doing it. My onc thinks it's important for me to do it so I can get the extra doses of Herceptin. I challenged him on this idea and he concedes it would be rational to give high risk women more as preventive measure instead of treating recurrence, but...

Frustrating and upsetting to feel like I have to upend my family, my finances, probably my job (no way will my employer, who has been wonderful, stand for me missing half of my work time for the next 4 months) just because I'm afraid of disease progression without extra H.

I keep telling myself many high risk women do well after Herceptin. I wish I never saw the damn thread regarding the trial.

anyway, thanks for listening and sorry for the long post. Any thoughts/ideas/opinions?

xo

janyce

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  • elmcity69
    elmcity69 Member Posts: 998
    edited April 2011

    bump

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  • jan125
    jan125 Member Posts: 411
    edited April 2011

    ummm, tough question. I am no oncologist, but I awlays do what mine tells me to. I am stage 4 and am on Herceptin for life. I only have to go to get it once every 3 weeks which is the standard protocol for those who are on Herceptin only. If you used this schedule you would miss less work and have to travel less.

    I would do the Herceptin, just me though.

    Best Wishes,

    Jan

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  • Letlet
    Letlet Member Posts: 1,053
    edited April 2011

    Do you have to travel far to get your herceptin? Mine is every 3 weeks as well and is administered for 30 minutes...

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  • elmcity69
    elmcity69 Member Posts: 998
    edited April 2011

    I've already finished my year of Herceptin. This "extra bit" is available only through a trial @ Johns Hopkins, which is 6 hours from my home. The first 4 months of the protocol require one to be @ Hopkins for a week straight.

    There is no substantial evidence that "more" equals better in earlier stages; everyone admits it is a crap shoot.

    I would do the trial in a heartbeat, but if CIGNA doesn't pay --and they told me they likely won't-- then it's a done deal. Even if CIGNA pays, there is the job hurdle (I only work 2 nights a week, but still) and finances.

    Really, it comes down to moving on and trusting in God/life/science - at least for me. Either that, or finding a new onc who will break the 1 year protocol - and that is what I'm looking for - anyone know of oncs who do that for earlier stage BC?

     Many women go without extra H once that year is done and do well for years. My "new normal" is a roller coaster some days, but when I think of returning to Patientland, I feel like screaming.

    anyway, thanks for the input and opinions!

    janyce

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  • pejkug3
    pejkug3 Member Posts: 902
    edited April 2011

    My onc told me a few weeks ago that there is new research coming out that says that 6 months of Herceptin is as effective as one year.  He said that if the research is officially released before July (and he doubts that it will be) - I would get only 6 months of Herceptin.

    I don't like that plan at all.  He said, "Why not?  If it is shown to be just as effective...?"  Hmmm...

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  • weety
    weety Member Posts: 1,163
    edited April 2011

    We are anxiously awaiting results of the 2-yr arm of herceptin.  Last I saw anything, it was expected to be given sometime in 2011.  I wonder when. . .

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  • elmcity69
    elmcity69 Member Posts: 998
    edited April 2011

    A good friend of ours --a physician associate who works in oncology in California-- says that the 2year protocol has not been shown to have outstanding positive results. The cardiotoxicity is the biggest reason.

    Frustrating to be "high risk" and yet receive it again in the event of a (God forbid) relapse. My surgeon said months ago, "Women like you should be on it lifetime!" Gee, thanks.

    I know I am casting a wide net - but I wonder if anyone has studied intermittent dosage? E.g., every other year, etc. I don't know - just searching for answers.

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