anybody getting Herceptin even though u are HER2- /borderline?

dancingdiva

basically I went to seminar and was told that maybe if u were borderline and finally HER2-,  u should consider taking Herceptin because some people benefit. 

Would like to hear from people's experiences if this is what u chose and why u did. 

Thanks!

Melrosemelrose

I received Herceptin through in the Herceptin B-47 clinical trial and was randomized to receive the Herceptin.  It was my choice to volunteer for this clinical trial and was made aware of the possible side effects.  I was made aware that I would be monitored for 10 years by the study.  The B-47 clinical trials is a Phase III clinical trial and was conducted to see if HER2  +1 and HER2 +2 would benefit from receiving the Herceptin.  Under the current and standard protocol, only HER2 +3 receive Herceptin along with chemo.  HER2 +1 and +2 are considered HER2 negative for Herceptin purposes.  Here is a link to the clinical trial http://clinicaltrials.gov/ct2/show/NCT01275677?te... .

I was fortunate that I did not have any side effects or reduction in heart function from the Herceptin.  I had my last Herceptin infusion March 2013.  I opted to participate in the clinical trial since I view it as my small small contribution to breast cancer research and was willing to take the Herceptin despite the potential health risks involved.  

exbrnxgrl

I almost participated in this trial, but became ineligible. However I am following it as it shows some promise. As kayb pointed out, it's not really an option for those of us in the US, at this time. Is it used in Canada for HER2 low?

dancingdiva

it's not used in Canada as far as I know as a standard. I know of someone who was borderline and for some reason her onc said yes when she proposed it, so she went for it. This was a few years ago. I went to this seminar this past week on BC and it was there that I found out about the trial, probably the one Melrose is in. it was there that I also found that it might be beneficial for those borderline gals like myself. I wanted to know if in the US or elsewhere some are getting it even if they are not on the trial but just proposing it to their oncs or if this was standard elsewhere. Thanks for the responses ladies. 

SpecialK

I participate in a clinical trial for a Her2+ recurrence prevention vaccine.  This trial consists of two arms and patients are sorted histologically (by tissue type - not having to do with cancer, this is like for organ transplants) and receive either an AE37 or a GP2 vaccine.  They discovered at some point in the trial data that the AE37 vaccine could have some potential benefit for low Her2 expressers and opened the trial for those who were 1+ and 2+.  This trial has been in the news lately due to very positive results in the arm I am enrolled in, and while phase II has stopped recruiting, phase III should be opening soon.  I don't know what the phase III eligibility will be, but it is possible that the AE37 arm will continue to recruit the Her2+1 and +2 patients.  Here is a link:

http://clinicaltrials.gov/show/NCT00524277

 

clarrn

I was asked to participate in the trial here in Canada,  but it required me driving an extra 3 hours for many appointments, so I declined.   I will be watching the results closely when they come out. Like someone else said it is not standard here yet.