HER2 equivocal FISH test result was 2.0

AlishaCatherine

My mom's original biopsy came back with a HER2 score of 1.8. For some reason, just this weekend, I realized we never got the FISH test results back from after the lumpectomy when a new biopsy was sent for pathology. I asked to see it today. FISH came back at a 2.0. This is technically still equivocal, but now I believe she qualifies for Herceptin. In fact. at the bottom of the new report it reads, "Available clinical trial data do not support excluding patients from trastuzumab treatment with an HER2 FISH ratio of 2.0 or greater." Up to this point she has been treated as Triple Negative.

I am looking for information, experiences, opinions about Herceptin treatment for those with equivocal HER2 results. Please share.

AlishaCatherine

Nobody?

Annie54

Sorry no one has posted with information for you. I am HER2 + and am currently taking Herceptin. I don't know about being in the gray area of positivity but have read on these boards that some women with very low positive scores for HER2+ are now being offered Herceptin as it is believed to be helpful to them. One women who posted (not sure where) was Triple Negative and was in a clinical trial to see if Herceptin was effective for TN tumors.

As for Herceptin....I love the stuff! It is liquid gold to me as it has proved so effective in HER2+ patients. I have ZERO side effects with it - although they do check my heart function every 3 months (no problems!) If your mom has the opportunity to take Herceptin, I would definitely go for it.

Hopefully someone with more specific information will come along and post. Beesie usually has great input on the technical side of things so I'd try and ask her your questions directly....just search her name.

Good Luck!

Annie

Annie54

Here is a article discussing Herceptin for HER2 negative tumors

http://www.cancerresearchuk.org/cancer-info/news/archive/cancernews/2013-02-26-Lab-research-suggests-Herceptin-could-benefit-more-women

If the link doesn't work, I found it under this thread - Clinical Trials, Research, News & Study Results. Go to subject "Top 5 Recommendations from ASCO" and read the post by Tectonic Shift.

Annie

AlishaCatherine

Thank you! So great to hear that Herceptin is working so well for you! It seems like a lot of people experience no or mild side effects. What a relief. If my mom does get it, I hope she has a similar experience.

Alisha

SpecialK

I think one of the reasons that you have had few responses to your question is that this is still controversial and currently being researched. Until there is definitive trial-based evidence (a completed trial) it may be problematic trying to find an oncologist who will give Herceptin to a Her2 equivocal patient, and an insurance company who will pay for it. I just checked for any trials in the US and can't find anything specifically for this, although I know that the Her2 vaccine trial I am enrolled in has started giving the vaccine to equivocal patients, post-treatment, who are histologically A2 negative. This is a recurrence prevention vaccine and they have determined that equivocal patients can derive benefit. While Herceptin is indeed a wonder drug for those of us who are Her2+, there can be definite cardiotoxic side effects, and these can be permanent. Your heart has to be healthy enough to receive a year of therapy, and you have to maintain sufficient cardiac function throughout. These threads are full of patients whose EF dropped and they had to discontinue Herceptin. Don't discount that - your mom is also receiving Adriamycin, which is cardiotoxic in its own right - negative effects from it are more likely to be permanent. Please keep us posted as to what you find out - wishing you both the best.

encyclias

I am an HER-Equivocal who is considered TN. My MO told me that he didn't believe I would achieve enough benefit from Herceptin to be worth the risk. It seems that diabetes actually enhances Herceptin's potential damage to the heart. It was my diabetes (type-2) which also precluded the use of Taxotere because of the neuropathy side effect which diabetics are already prone to as a complication of their disease. It seems more doctors need to think individual 'whole-body' health instead of just a drug's side effects in general.

Good luck to your mom.

Carol

AlishaCatherine

My mom will be receiving Herceptin.

I was able to find the new algorithm which has been updated based on an October 7th clinical guideline updates. Now based on the current guidelines criteria for being Her2 positive status is indeed a FISH ratio >=2. Her oncologist confirmed this. Though what's worrisome is she only realized after I brought her the new information. I hope other patients don't miss out on an opportunity for targeted treatment.

This is huge news for us and probably many others who were right on the border.

AlishaCatherine