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Unbelievable, HER2 negative AND positive!

cekramer
Posts: 33
Joined: Oct 2000

hi all,

well i just threw the docs for a loop. apparently i'm not totally HER2/neu negative since the tumor in my arm overexpressed proteins. soooo... my whole treatment plan of xeloda and taxotere is off. they want me to do carboplatin/taxotere with herceptin, which is a great drug i hear. but i will have to do weeky infusions throuout 4-6 chemo cycles and then every 3 weeks for a year. i am so floored. i had everything figured out and was going to start next week after my dental work was done.

has ANYONE ever had this strange path report result? i know my docs are scratching their heads and talking about me. it's really important that you get the FSCH test done on your tissue so they can test for this very important gene. herceptin by genentech is a really effective drug for metastatic patients.

well, keep in touch.

luv,

c

hummingbyrd's picture
hummingbyrd
Posts: 965
Joined: Sep 2002

Been on Herceptin since Aug 2001, great drug. I haven't had any side effects. I take mine every week so drug level stays the same, no peaks and valleys. Best thing I did besides my hysterectomy was to get a port-a-cath. No more IV's, no more hunting for veins, yuch! My tumor was ER+/PR+ and HER2/NU in rt breast, but PR- in left breast. Go figure. They say I'm on Herceptin rest of my life. Good luck w/ the chemo and God bless. Hummingbyrd.

nasa2537
Posts: 317
Joined: Apr 2002

Make them work for their money!!! I'll be praying that all is well for you. God bless, Cyndi

inkblot
Posts: 705
Joined: Jul 2001

Hi C:

I was strongly Her2 positive. (Had the sentinel node biopsy, etc.)

I got three opinions re treatment suggestions. All were the same, except for FoxChase (in Philadelphia). One of the oncs there wanted me to try the Herceptin for 52 weeks. After researching the drug and it's potential cardiac side effects, I decided against it. I had no mets at dx and my tumor was small (1cm). To me, it just didn't seem the best thing to do. Memorial Sloan Kettering did not recommend the Herceptin and neither did any of the other docs. At the time, FoxChase was offering the Herceptin trials and seemed (to me)anxious to get the rosters filled. The onc said that the only qualifying criteria for me was the strong Her2 expression properties of my tumor. All other recommendations, including my surgeon's, was 4 cycles of AC and radiation. Since the Adriamycin can cause heart damage,(rare, but it does happen)I just didn't want to put myself out there for an even greater risk with Herceptin, which no one else was recommending.

Fox Chase had recommended giving me the standard AC and then follow it with the year of Herceptin. It just didn't ring right for me and I didn't want to expose myself to the side effects of the drug when they could not really justify/qualify it. With no evidence of spread, clean nodes and a small tumor, I told them thanks but no thanks.

I passed my one year mark of completing all treatment (radiation ended in Oct.'01)last week!!! I feel good and have no complaints.
All follow up tests have been good and I'm clicking right along...continuing to feel good about my choices and life, in general. Feeling good emotionally, of course, takes some focus, effort and plain old hard work, but it's worth it. A cancer diagnosis can change us forever, so may as well do the work and try our best to make the changes positive!

We can never know for certain whether the choices we make regarding treatment are the absolute best ones. Research BEFORE making any choices, is very helpful. It comes down to arming ourselves with the best info we can find and then trusting ourselves to make the best educated decisions we can and feeling good about them. It helps to keep in mind, re Herceptin, that many industrialised countries, outside the US, don't even test for Her2, as they feel it has no bearing on treatment choices. It's a tough thing, all the way round, really because our bodies are all different and respond differently. If I had to state one thing I've learned through my bc experience, it would be that I now realize that I had no guarantees in life BEFORE my bc. I only thought I did! Ha.

Although your neg/pos case is unusual, the most important thing, always, is to trust whatever treatment decisions you make, trust yourself and have a doctor in whom you have the utmost confidence to treat you as the whole, wonderful person that you are.

Your case is quite different from mine but I wanted to share here that some treatment centers/hospitals do suggest Herceptin, even without any tumor spread/mets.

Warm hugs and keep us posted!

Love, light and laughter,
Ink

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