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cindys
04-22-2004, 04:51 AM
Hi, this is my first time to find this board. I was dx 10/1 with 9x9cm tumor, ER/PR+, her 2+ with 4/11 nodes. I had four EC andfour taxoteres/herceptin. Anyone out there have arrhythmias from the herceptin? I got premature ventricular contractions. Ended up in thehospital. couldn't find out anything, just high bp so started me on bp meds. I ended up having the herceptin alone the day after I was dc's from hospital and two days later...got PVC's again. Iam afraid to take it now because I don't want to die from the treatment, even though it cures my cancer. My question is my Fish test was 5.1 is that really high?thanks xoxo cindy

Paul
04-22-2004, 06:38 AM
Cindy,

By way of background, a women is not considered HER-2 positive by FISH testing until the HER-2 -to-CEP 17 ratio is at 2.0 or above. Your FISH score was 5.1. In the few charts and graphs that I have reviewed, the median FISH score is between 3.0 and 5.0. The population of scores get pretty thin around 7.0. The anomalies seem to occur at the 9.0 point and above.

Your FISH score is around the median score, or perhaps a tad higher. Keep in mind that Herceptin tends to work better in strongly HER-2 positive women. So, a higher FISH score may not necessarily be a bad thing once you know you're HER-2 positive given the existence of herceptin.

Ron
04-22-2004, 06:51 AM
Cindy,

Welcome to the site, this is probably the best place on the web for HER2 people!!! You will receive a bunch of good information from the ladies here...and sometimes us guys can help. Mostly I am just a CHREERLEADER though. Also, I am sorry you have a need for this site...

I am no expert on this by any stretch of my imagination.... But, my wife Cyndi has had problems with the Herceptin also, Pleural Effusions and some heart related symptoms too. At this point, the doc has suggested we get her to NED then introduce Herceptin again. I certainly understand that if the cure is going to kill you, then what's the point??

I see where several of the ladies have had major problems with the Herceptin "Loading Dose" which is twice the maintenance dose. After the loading many of these same ladies have tolerated the maintenance dose with minimal sides.

I hope some of the other people can give you better details and answers for your other questions.

God Bless You,
ron

Ronda
04-22-2004, 01:31 PM
I could only wish for such a score. My fish test was 19.1.

Paul
04-23-2004, 01:26 AM
Rhonda,

I remember reading that Barbara Bradfield, the first women saved by Herceptin, had a HER-2 status level that was described by Dennis Slamon, M.D. (credited with Herceptin's discovery) as one of the highest he had ever seen. Barbara participated in the Phase I Herceptin trials in the 1990s and took one regime of herceptin and cisplatin and remains NED today.

As I mentioned below, a high FISH score is not necessarily a bad thing given the existence of herceptin.