Taking Herceptin for a full year?

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kimbly
kimbly Member Posts: 398
edited June 2014 in HER2+ (Positive) Breast Cancer
Taking Herceptin for a full year?
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  • kimbly
    kimbly Member Posts: 398
    edited May 2008

    I am so curious as to why and how the medical professionals decided about keeping women with Her2+ cancer on herceptin for year??? How did they decide on this time frame? 

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  • henny
    henny Member Posts: 89
    edited May 2008

    My onc said it was basically a random choice and that there is an upcoming study to compare 1 year to 2 years of Herceptin. He also said the effects seem to be long lasting tho it hasn't been around long enough to really measure it. I may be stopping after 9 months because my EF went down 30%-so I guess I'll take whatever I can get and believe it will have lasting effects



    Henny

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  • bluewillow
    bluewillow Member Posts: 779
    edited May 2008

    Hi Kimbly, glad you asked this question-- I have wondered that also.  I plan to ask my doctor next week, although I am half-way through my year of Herceptin.  Thanks Henny for your info.  When I was first dx'd HER2+, a nurse mentioned 2 yrs but when I asked later, they said definitely just one.  So far I'm tolerating the Herceptin very well, but I'd hate to have to wear this darn port any longer!  Hope we get some more feedback on this.

    Take care, all!

    Mary Jo

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  • Roxi65229
    Roxi65229 Member Posts: 462
    edited May 2008

    Kimbly,

    Good question. I awaiting results from my MUGA test which was yesterday. My port goes in Monday and Chemo starts Tuesday. The week of the 19th is tentatively the start of my year long Herceptin.



    Henny and Mary Jo...I see your both ER-/PR- as I am. Was your chemo A/C followed by Taxol or just A/C.



    Roxi

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  • Denny123
    Denny123 Member Posts: 1,886
    edited May 2008

    My opinion is that it is a good thing.  I have been on Herceptin for over 4 years since was Stage 4 from the get-go.  Herceptin is responsible for keeping my very aggressive liver mets in remission for over 3 1/2 years.

    I will be on Herceptin for life.

    Denise

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  • KLynn
    KLynn Member Posts: 1,407
    edited May 2008

    Hey Kimbly,

         I was in one of the original trials for herc. in 2000. Half of the women were put on herc. for 6 months while the other half were put  on it for 1 year. Random draw, nothing to do with dx (except for her2 status) of course after having chemo and radiation I was looking to get the 6 month draw. I didn't, and started the year, thinking that maybe I would withdraw after 6 months, because I was just so tired of more treatments. Once I got going with the weekly treatments they didn't seem too bad, and I managed to stick to it for the year, I really didn't want to screw with the trial study too much either.Well that was almost 8 yrs ago, and soon after that the protocal became women getting it for 1 yr. I guess the data show those of us with the yr didn't have any more s/e's and maybe our recur time was better. Not really sure, but I did have a pretty good run being NED, until 2006 when I had my recur to the lungs.I have been on herceptin now this time for over two years, along with chemo drugs for 2 years. I have been stable again now since Nov. and only get the herc. every 3 weeks instead of weekly.

        I too will be on herc for life like Denny. As long as the heart shows no signs of side effects, but so far so good. With the trip +++, the cancer is very aggressive, and the only way to treat it is aggressively. I believe the herc. has made a huge difference in my BC staying somewhat under control. Hope this helps you with some of your questions about herc..Talk to your oncologist about how long he will keep you on it. I'm happy to hear that Denny has been on for over 3 yrs. with little problems, and how good  it is working for her. This is why it is so important to talk and ask questions here.. I wish you the best  KLynn

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  • bluewillow
    bluewillow Member Posts: 779
    edited May 2008

    Hi Roxi,

    I had 4 DD A/C then 12 weeks of Taxol, and did well with all of it-- was never sick, worked right thru, but got fat during treatment! Cry  But now I feel great except for some fatigue.  Good luck with your MUGA and port and I hope you do very well with your chemo and Herceptin!

    Mary Jo

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  • kimbly
    kimbly Member Posts: 398
    edited May 2008

    Thank you for all your replies ladies.  I saw so many doctors this week including my onc. and forgot to ask this question.  I have had it in the back of my mind for awhile now actually but it slips out frequently I guess LOL 

    I started Herceptin in December with my chemo, chemo finished at the end of March.  I have the remainder of the year of herceptin.  My onc did stress to me when I asking about supplements etc that right now regardless of all the other things I can do to help keep the cancer at bay .. Herceptin is my key!!!  It is good to know that with those that have had mets that herceptin works!!!  I have had two muga's and so far so good, due for another in July.  I don't see my onc. now for 6 weeks so will right that question down for the next visit.  OR I do have a friend who works in a cancer center in northern Ontario perhaps I can ask her to ask one of her drs there.   

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Hi Kimbly,

     My oncologist told me that most of the testing was done for 1 year, so they don't really know if less will work just as well. Of course, I had to stop Herceptin after only 3 months, so she may have been trying to make me feel better. My EF plummeted from 67% to 33%.

    I'm just hoping I got enough to keep the cancer away, since I can't have any more cardiotoxic drugs now. I have passed my one year mark, so I feel blessed to have had some time. I hope to have many more years, but we all know how the big BC likes to sneak back into our lives!

    Henny, I'd be surprised if your doc kept infusing you with Herceptin after a 30% drop in EF. That's a very significant and dangerous drop.

    Best of luck to all you positive ladies. :)  (and the rest of you, too!!)

    Miss S

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  • henny
    henny Member Posts: 89
    edited May 2008

    Hi Everyone,

    Roxi I did have A/C every 2 weeks (x4) followed by taxol (x4) and herceptin.



    Miss S-I guess I wasn't surprised about continuing the herceptin. My pre-chemo EF was 83%-being a swimmer and I have (had??) a really strong heart. I work at an imaging clinic and had a CT angiogram just before I got diagnosed with good heart motion and very clean vessels. My EF now is 54%. I do have days when I am short of breath and tired but it is odd that I only occasionally feel that way. I'm going to have another MUGA next week and if my EF is lower that's the end of herceptin for me.



    I was freaked out about that at first because my onc said if it weren't for herceptin our conversations now would be about how to control mets. Am now getting more used to the idea that i have done all I can and whatever is in the future, I can't control. So I made a reservation to go to Italy to see my brother who lives there. Why not take a trip using plastic and worry about paying for it later? After 9/11 I kept saying "live life now" and this bc has spurred me to do that more



    Henny

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  • EGAL
    EGAL Member Posts: 539
    edited May 2008

    I finished my Herceptin today! 36 infusions since last August.  My onco said 36 was the number recommended for Stage 3ers.  Stage IV is ongoing.  It has only been a few years now that they even give it to Stage 3ers.  I asked if it would be beneficial to go on a maintainence of maybe once a month or once every 6 weeks but he said no.  It is very toxic to heart.  So I will be "watched very carefully".  I have a MUGA scan in six weeks (last one in January was the same as when I began) and before that I will have  brain and abdomial CT's.  I am glad to be finished as I am really, really tired. More so that after 6 months of chemo (4 AC & 4 Taxotere) and 6 weeks of radiation.  I am just hoping for the best Undecided

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  • henny
    henny Member Posts: 89
    edited May 2008

    Congratulations EGAL,

    Here's to the old energy returning and goodbye to the nasty fatigue



    Henny

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  • CindyB
    CindyB Member Posts: 43
    edited May 2008

    My oncologist said that there was a small, recent European study recently done that indicated three months of herceptin may be as effective as one year.  She also said that because it was small and European (American physicians apparently take these less seriously) it would need to be replicated.  Still, it seems like a heartening result.

    Cindy

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  • debic
    debic Member Posts: 216
    edited May 2008

    HI,

    I guess we all have the same question,  for how long do we take herceptin.  I did 4DD A/C 12 weeks taxol/herceptin and then herceptin until today!! Today should be my herceptin day, but my year is up and the Dr. says I'm done.  I have to say it feels funny that it has been three weeks since my last herceptin and I don't have to go today.  When I got up this morning I felt good then I thought I'm not having blood drawn today I'm not getting herceptin today does that mean I get cancer back today???  I guess herceptin is my security blanket.  I am looking forward to getting more energy and not having the port but I must admit I am feeling a little scared.

    Debi

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  • mimi1030
    mimi1030 Member Posts: 700
    edited May 2008

    My mom is on it indefinitely as she is stage 4 and it is what is keeping her liver mets under control.  Only one more spot to go and NED.  Not sure how they break it down for early stage, it wasn't available to my mom in 2004 when she was stage 1 so not sure if it would have made the difference between going from 1 - 4 in those 3 years in between.  We will never know.

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