Topic: Herceptin Protocol

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!

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. 

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

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

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

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.

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.

Koryn--I sent you a private message;

Cathy