Herceptin info please

GointoCarolina

I finished my chemo January 29,2009.Have had Herceptin every three weeks since,will finish in October.My MUGA has dropped ten points in 6 months(high 60's pre chemo to now high 50's).My side effects from the herceptin are getting worse with each treatment,nausea,fatigue,heart pounding,depression.I had no lymph node involvement and clean margins.I am wondering if going back to weekly infusions would be better or even stopping all together.I am going to discuss this with my onc, who is very conservative and will want me to provide evidence to back up any changes.Hope to hear from many of you and hope you all are having a good day. Jackie

bluedasher

We are pretty similar; both stage I hormone negative. I finished chemo a few days after you and I'm scheduled to finish Herceptin in October too.

Before starting chemo, my onc told me that we would do Herceptin for a year if it went well but that I shouldn't worry if it had to be stopped. She pointed out that in Europe they give it for only 18 weeks. There is even a Finnish study, FINHER, where they gave it for just 9 weeks. I don't think there is any completed study that compared the results of giving Herceptin for 18 weeks vs 52 weeks, so we don't know yet whether the extra time gives better results. I've been hoping to see results from the HERA study which compared giving Herceptin for 1 or 2 years but I haven't seen anything released comparing the results of the two arms.

I'm not having side effects from the Herceptin and my MUGA has stayed good (baseline was 65% and my latest test was 62%) so I'll continue, but if my MUGA dropped a lot or I was having bad side effects, I think it wouldn't bother me to stop getting it. And we are just stage I so chemo plus 6 or 7 months of Herceptin is still pretty agressive treatment.

How long do they take to give you the infusion? Some places do it over 30 minutes and some do it slower so it takes 90 minutes. I asked  my onc why they were using 90 minutes and she said that they find that there are more side effects with the shorter infusion time so slowing the infusion might be something to try if your place does 30 minutes. 

Which chemo did you have? Everything I've read says that the drop in LVEF from Herceptin reverses after Herceptin is stopped. The drop due to some chemo drugs like Adriamycin doesn't reverse. Some people take a break from Herceptin and then start it again after the LVEF has come back up. My impression is that my onc would just stop it and not try to resume in my case.

GointoCarolina

My chemo was TCH(taxotere,Carboplatin,herceptin) and I was very sick throughout,due to anemia and gastritis.I felt great last week,now I am feeling as bad as I did on my "good" chemo days.I am certainly going to mention the slower infusion rate.They are doing about 30 minutes for me.I see the doctor tomorrow so want to be prepared with as much iinfo as possible..He is a very good doctor,most of the time I appreciate his cautious attitude,which is why he wnats to go with the full year of herceptin.I talked to him about having it for a shorter time and he said there needs to be more testing that shorter is as good as the full year.I think my tumor sze and that it was Grade 3 make him err on the side of caution.But I feel like my body is telling me it has just plain had enough.I am due for another MUGA the end of July and I will definitely stop if it has dropped more.Thank you so much for responding,this can be a lonely journey. Jackie