Herceptin Protocol

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Sunbunny
Sunbunny Member Posts: 38
edited June 2014 in HER2+ (Positive) Breast Cancer

Hello everyone,

I finished TCH in May 08 and am following up with 1 year of Herceptin.  The first treatment of Herceptin was the normal once every three weeks dosage and it made me feel awful for several days.  I asked my oncologist if it was possible to get a lower dosage every week.  We discussed the fact that I wanted to make sure I was able to finish the year without interruption and that my initial muga score was 53.  Most people inculding myself would love to have infusions every 3 weeks but I wanted to do the best thing for myself even if it was not convenient.

Fast forward 6 months and I wonder if I am making the right decision.  I asked the question to my oncologist way back in May if there was any data on the effectiveness of the treatment of the yearly Herceptin given every 3 weeks versus weekly infusions.  He said there was no data to support one way was better than the other.  Right now I wonder if I am making the right choice and if any of you have heard whether:

1) having a triple dose of Herceptin in your body every three weeks makes for getting more cancer cells because you have more of the drug in your system at once even though you wait 3 weeks for the next infusion or

2) having a weekly dose of Herceptin keeps a constant amount in your system as a catch all.

I don't know whether I am sabatoging my treatment by insisting on the weekly regimen.  Maybe I have become more discontent with having to go for treatment every week or what.  I just want to do the best thing.  I have another muga next month - it will be about a year since my last one.  I just wonder whether I am worrying to much about the first muga score.  And whether that triple dose is worth feeling low for a few days.

I had 9 of 13 lmyphnodes positive so I am worried about recurrence.  I would appreciate any additional information you have about the treatment plan and what a change to the protocol does to the overall success of the outcome.  Thanks to all and wishing you a Happy and Safe Thanksgiving.

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  • Mocity
    Mocity Member Posts: 451
    edited November 2008

    My regimen is Taxol/Herceptin weekly for 12 weeks and then Herceptin every 3 weeks for a year.  It is a pain to go weekly but so far the side effects are less I think because you don't get hit with a big dose.  I had a bi-lateral mastectomy 9/16 for DCIS in my left breast.  When my pathology came back it was ER+, PR+ and HER2+++.  Nodes were all clear but they found a very small tumor of IDC (.4cm).  So my age, early dx and HER2+++ led to an aggressive treatment. 

    Supposedly after my surgery I had a 10% recurrence rate.  the Taxol/herceptin brings that % down to 5%,  A more aggressive chemo would have brought it down another 1-2% based on whta I was told.  So who knows.  It is so hard to make all these decisions.  I had just made the decision to lose both breasts in order to not worry about this the rest of my life.  ugh.

    We will make it through!

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  • LittleFlower
    LittleFlower Member Posts: 405
    edited November 2008

    Hi Sunbunny,

    I was in your exact position last year.  I was diagnosed in June 06, had a bilateral mastectomy with 4 pos. nodes, and cancer in both breasts.  Needless to say, as a stage 3er i too worry about recurrence ALOT.  So my treatment was AC every three weeks, then 12 weekly taxol with herceptin.  When i finished that treatment (which was very difficult for me) i went straight to every three weeks and that was great, for about 4 months or so.  The big dose every three weeks gave me a headache that lasted for a few days.   Besides that i just felt off after each treatment.  I talked to my doc, went on to begin weekly treatments for the rest of my treament.  the weekly was so much easier for me.  the way i felt about it was that the original studies were done with weekly infusions.  that helped me feel like all those good statistics came from weekly infusions!  Besides that the three week and weekly treatments are supposedly the same.  the herceptin stays in your system awhile according to my onc.

    Good luck with your decision.  I guess the bottom line is that if we get our herceptin ( one way or another) we're pretty lucky!

    LittleFlower

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  • snowyday
    snowyday Member Posts: 1,478
    edited November 2008

    I have to go back and read the study protocol's I didn't realize they were weekly infusions, or just by-passed that part.  I had read the Finnish study about the timeling for getting herceptin and I really am wondering why I have to take it for a year and face the risk of a heart conditon, it's already making me fell really sick and my sis said I've completly changed since my second last treatment (it would have been my third treatment).  I'm also starting herceptin a year after my chemo was finished and I read in one study where they said taking it sequenchly (sp) compared to concurrently doesn't work as well so I want to find out more about it.  I just can't help wonder if the drug company is just making big bucks of off Herceptin and thats why in North America they are saying a year, it's the drug company recommendation the Dr.s are going by.  I guess after being misdiagnosed twice now I just don't trust anyone in the cancer heath service (industry) any more.  It causes me alot of worry and I'm very tired feeling that way as well. 

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

    Hey there Sunbunny, 

    Here's how I understand it, I don't think there is much difference between the every 3 week doses and the weekly...I have been on herc. for three years this time around..I had been in one of the original protocols in 2000, and recieved herc. weekly for a year. With my recur in 2005, I started on chemo again, and herc. along with it weekly. I had my chemo and herc for two yrs, and then went into remission (that was  a yr ago). When I was told I would stop chemo but still be getting the herceptin (probably for life, as long as my heart hangs in there) I was going to be getting it every week, and I asked to switch over to every 3 weeks..Doc said that would be fine, and there wasn't any difference.I wouldn't mess with my herceptin, I really think it is what has made the difference for me..I've been on it for three yrs now, and my 2-d echos have been fine, I get them every 3 months to make sure. I haven't even had a dip at all. I hope this helps some..If you have any questions just pm me...Good luck KLynn

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  • Chelee
    Chelee Member Posts: 513
    edited November 2008

    SunBunny,   I was like you and wanted to do the best thing for me when it comes to herceptin.  Everyone I knew was doing the herceptin every 3 wks.  I called "Genentech" at that time to see what they had to say about weekly versa's the 3 wk dose? (This was back in 2006) They said they could not recommend or comment on anything other then weekly because that is how their studies were done.

    I started doing herceptin weekly and made it almost through the entire year on weekly.  It is a pain going in that often but I figured it was easier on the body having smaller doses and more of a controled consistent dose in my body.  I'm a stage III'er that's Her2/neu, and had 5 positive nodes so wanted to everything I could that might help keep "IT" away.   I had my 3 month Echo's through the year and they were always great doing it weekly.  

     I can't help but think some (not all) of the reason the (Oncologist) push the every 3 wks is NOT just because it gives us a break from the cancer center.  I really think ALOT of it is it helps keep down cost and free's up chemo chairs.  Others may disagree but I really believe it.  I can't see how weekly would not be better when you are keeping a constant even flow of the drug running through your body versa's every 3 weeks.  I almost made an entire year on weekly...but about the last three months of my herceptin trt I finally tried the 3 week dose.  I admit...it was nicer having a break...but looking back I feel for me personally...I made the right decision to do weekly herceptin which is the way Genetech did all their studies. 

    Everyone here has to make their own decisions...but personally I think you are doing the right thing sticking it out weekly.  I know its not easy going in weekly because I did it too...but I'm glad I did.  There is nothing easy about any of the decisions we face once DX.  Its darn right hard.  But you do what you feel is right for you...and its just my opinion but there is no way you are sabotaging your treatment.  And since your first muga was 53 I think you are making the wises choice doing weekly.  If you were on the 3 wk dose and your muga dropped like a rock you would wonder if its because your doing the 3 week dose.  This way IF it did drop...and likely it won't...you will know you did everything right to prevent it.  :)  So I say stick to it.  Hang in there.

    Chelee

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited November 2008

    Sunbunny,

              I am really surprised they have not done a muga scan in almost a year, especially with that low of number. Mine drops on the herceptin so I go every month or so to keep a eye on things. They gave me a 6 week break off Herceptin to help my heart rebound. I just started back and I am scheduled for a muga next week after I have had a month back on it. I am just surprised cause thats a low number and I would think that they would at the very least give you one every 3 months to keep a eye on it. Just my thought on it. Every dr. has their own way of doing things.

                               Good-luck on your Muga Scan!!!!!!!                          

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  • Chelee
    Chelee Member Posts: 513
    edited November 2008

    SunBunny,  I just read "nobleanna007" reply to you about the muga.  Some how when I read your post I MISSED that part.  I just want to add my 2 cents about the same thing.  What is your oncologist thinking by NOT having you do regular muga's or echo's? 

    Especially when your first muga was low to start with.  You should be having a muga/echo at least every 3 months.  That is usually the standard protocol when doing herceptin.  They always stop your herceptin if you hit 50 or below.  Your first one was 53 so I don't understand why your onc didn't have you do one long before now just to play it safe?  Because they have found with herceptin if your muga/echo drops below 50 and they pull you off and you have a herceptin break your heart usually recovers nicely then you can go back on it.  If you haven't had a muga in six months I would push/demand one.  (Nicely of course)  :)  Call your onc Monday and tell him you've done your homework and you would feel alot better if you had a muga/echo asap.  (I had echo's and they are alot less invasive...and much quicker.)   But either way...you need to keep an eye on your heart.  Keep us updated. 

    Chelee

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  • weety
    weety Member Posts: 1,163
    edited October 2009

    This is an older thread, but I wonder if there is any new info out there regarding Herceptin weekly vs. every 3 weeks.  My treatment right now consists of TCH (the Herceptin is weekly during this 18 weeks) and then Herceptin every 3 weeks for the remainder of the year.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited October 2009

    Hi,

    I have been on Herceptin every 3 weeks for 6 years and will be on it for life.

    To date, I have not heard of there being a difference.  Since I am in remission for very aggressive liver mets, if a weekly treatment would do a better job, my onc. would certainly recommend it for me.  Herceptin is the ONLY reason why I have been in remission for over 5 years.

    Denise

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  • weety
    weety Member Posts: 1,163
    edited October 2009

    Wow!  Praise God for Herceptin!

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  • Dolores81035
    Dolores81035 Member Posts: 82
    edited October 2009

    Hello Everyone,

     I get my Herceptin every three weeks and I prefer it that way. I think if you get it every three weeks or every week it still adds up to the same.

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  • weety
    weety Member Posts: 1,163
    edited October 2009

    Did anyone get the herceptin weekly during chemo and then change to the every 3 weeks when chemo was finished, or was it every 3 weeks from the get-go?

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited October 2009

    Weety, the BCIRG 006 trial did Herceptin once a week during TCH and then once every 3 weeks after chemo. I think other studies did that too. Herceptin stays  in your body for weeks so I'm pretty convinced that it doesn't make a difference whether you get it once a week or a triple dose once every 3 weeks, but if you are concerned that there might be a difference, you can take comfort that you are getting it the same way that was shown to work in the trial.

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  • KorynH
    KorynH Member Posts: 301
    edited October 2009

    I will finish my 12 months Herceptin on Dec. 2nd. The inital doses given weekly along with TC, then every 3 weeks after that at 3 x the dose of the initial. Make sense?

    My question is, has anyone ever asked the question to their ONC, what about continuing Herceptin for 2 - 5 years? Because it has only been used in the adjuvent setting for 5 years or so, they don't really know the outcomes for women with early stage at the 5 and 10 year mark.  If most recurrences happen in the first 2 years for Her2+, then why not just continue it through the 2 year point as long as your mugas stay within healthy range? I am allergic to Tamoxifen and actually was told by my ONC that since my periods have stopped I don't need a SERM. He cited the Zebra study which I read and have decided to follow.Click the study to read for yourself. But with out Herceptin I fear that I will feel vulnerable to recurrence. Any thoughts?

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  • cbm
    cbm Member Posts: 475
    edited October 2009

    Koryn--I sent you a private message;

    Cathy

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  • Mocity
    Mocity Member Posts: 451
    edited November 2009

    I had my last dose last week.  I did 12 weeks of Taxol/Herceptin adn then Herceptin for a year.  I too am concerned about stopping it after a year.  What is the significance of one year?  It makes me nervous.

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  • Cal-Gal
    Cal-Gal Member Posts: 30
    edited December 2009

    I have been on weekly Herceptin treatments for 6 months-I have another 6 months to go--

     @Koryn-I have heard that there is now reason to think that 6 months vs the 1 yr might be okay--cant remember where I read that ----vs what you are saying about 2 yrs---

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  • weety
    weety Member Posts: 1,163
    edited January 2010

    I read an article (can't remember where) also saying that it is suspected that even less than a year of Herceptin is expected to still give similar recurrence rates as the 1 year.  But, the article was talking about how hard it is to get the evidence for it, because who would enroll in a study looking at the difference between the 1 yr protocol or a 6 months protocol!!!  I sure wouldn't take the chance either.  I guess they will have to get a lot of their data from women, who for one reason or another, could not finish the standard year.  I also know there was a study goiing on with a 2 yr protocol, but never saw any results or news about it.  Has anyone else heard anything about that?

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  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited January 2010

    All I can think of to say right now is...thank God for these threads and the information shared here.  (Sorry...a little mooshy here)...

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  • NonniO
    NonniO Member Posts: 31
    edited February 2010

    I have what might seem to be a silly question, but here goes anyway.  I'm nearing the end of my year-long treatments - started out with TCH + Avastin (BETH trial) and I think I have one more treatment to go.  So today after my 17th treatment, they scheduled me for two more, not one more like I thought.  So, just how many treatments would there be, taking herceptin every three weeks that way I have been? I thought there should only be 18 - am I missing something here?

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited February 2010

    NonniO I am also doing 19 treatments so you are not alone.  I have one more to go and I figured at this point what does another one matter. 

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  • NonniO
    NonniO Member Posts: 31
    edited February 2010
    Did your oncologist tell you why you needed 19 instead of 18 - By my count 18 treatments covers one year.  No one told me to expect 19 so here I was counting down the treatment days until I was done only to find out that I wasn't! He asked me how many I had left - isn't he supposed to know these things?  I'm just a little frustrated.
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