Herceptin more than 1 year

cindbo

Hi,

What have all of you heard/read about continuing herceptin for more that 1 year? Any new info out of the San Antonio meeting this year? I have googled for info but not finding anything new/current. I am still taking herceptin, my 1 year marker is Feb, figure I would get thinking about it now. Happy Holidays, Cindy

wendyk13

Hi....my last H is 1/23 and my onc went to San Antonio and he was telling me to go ahead and schedule my port removal anytime after the 23rd so I guess it is still a year.

supermom723

I was recently diagnosed with invasive ductal carcinoma.  I had a lumpectomy and 12 nodes removed four of which were positive.  After surgery I found out my margins were not clear.  I changed Dr's and went to a specialist.  He also found some questionable calcifications in my other breast so I opted to have both removed because I knew I could not go through that again.  My surgery was two weeks ago.  I had a PET scan and CT and they were both clear.  I was diagnosed HER2+.  I have read a little about Herceptin and a test that can be done called Oncotype DX which measures activity of 21 genes and gives a score to predict risk of recurrence.  It is expensive but some insurance co's pay for it because it can prevent a pt from having chemo.  I am having a hard time understanding why I need chemo!!  I am scared to death!

wendyk13

Hi supermom723...

You need chemo due to 4 positive nodes and because you are Her2+ - here in the US they don't give Herceptin unless you have chemo.  Her2+ bc's are way more aggressive and taking Herceptin can cut your risk of reoccurance by more than half.  Usually they don't bother suggesting the oncotyping when you are Her2+ as you really need the chemo so you can get the Herceptin.  Her2+ loves to come back as distant mets so your having a bil mastectomy won't help with that.

All that being said...I finished chemo in May and I did great.  Was NEVER sick (honest!), never tired.  My hair of course all fell out but it grew back..cute little curls!  My last Herceptin is 1/23...the Herceptin caused me NO se's at all.  Period.  The important part I learned was to hit it with everything you can the first time and hope for a cure.  If it comes back, it is treatable, but they will never cure you...well, at least with the drugs out now.  Chemo is doable, and I am the biggest weenie of them all.

Good luck to you!  If you want, PM me anytime.  I did Taxotere and Carboplatin by the way.

Margerie

Cindy,

I think the HERA trial results release (one year vs. 2 years of herceptin) got pushed back until 2009.  Rumor has it, there is not a difference in recurrence rates between the two arms at this time.  So 1 year is still the standard.

supermom723

wendyk13

Thanks for your reply.  I got my OC appt rescheduled to Jan 8th so I will let you know what I find out.  If I have to have chemo, I can do it ... I'm a weenie too ... but alot tougher than I think I am.   I have some more reading to do.  Glad I met you.  Hang in there, sounds like you are on the downhill side and made it just fine.  God be with you.  I will remember you when I say my prayers each day.

talbrig13

Hi Wendy,

I am restarting my Herceptin Friday.  I am a week behind and my year will be up Feb 8th....I was getting fever, chills and flulike symptoms and we thought it was the Herceptin.   After a port flush last week we discovered it was actually the Heparin flush....so I will get an IV in my arm and forget using the port.   I really wanted to finish my year and we thought I couldnt   I am so relieved.

I did have an oncotype DX test done, my onc was leaning toward no chemo or Herceptin, based on the size of my tumor.  The IDC was only 30% the other 70% was DCIS, however my oncotype came back very high - 47.   I am so glad I did it.  And glad I did the chemo.  I also did carboplatin and taxotere with the Herceptin.   It was very doable and I wasn't very sick.

Good luck...supermom723.  You will be fine...hang in there!