Continue with Herceptin?????

[twoboysmom]

I haven't posted a question in quite a while. I am looking for some feedback. I am in my 4th year of Herceptin. My original diagnosis was in 2002 with a recurrence in 2003 in clavical. Started Herceptin/Navelbine weekly for one year. Took 7 months off and due to my persistence started again every 3 weeks since with no further recurrences. My doctor now feels I should stop the Herceptin because in his words "you can't do this forever". He says there isn't enough known about long term Herceptin use. Could it damage organs. I am going to my oncologist at Dana Farber beginning of June for her opinion.

Any advice or thoughts about my continuing or stopping the Herceptin. Mind you, I don't want to stop the Herceptin. I feel if it isn't broken why fix it. I would appreciate any comments.

Thanks,
Karen

[Cathya]

Karen;

I understand your feelings about this....what a scarey thought! I would be inclined to want to stay on as well. If this doesn't prove out to be possible I would ask that I be monitored very closely using tumor markers, including the Bayer Serum Her2. I would ask my onc if I could spend perhaps 6 more months using herceptin and doing markers prior to each treatment (i.e. the morning of the treatment just before when theoretically your herceptin would be at it's lowest). Then when off herceptin while continuing to get markers done regularly, you will already have some idea of your own body and any fluctuations in results that might happen. Then, if you saw markers rise you could take a loading dose of herceptin to knock it out (and hopefully remain on herceptin for another period of time at that point). If you search out Gina's posts in this regard they are very informative. She is ER- and this makes her strategy a little more straightforward as if you are ER+ you also have the hormone side to contend with.

Keep us informed,

Cathy

[Joe]

We are not aware of any long term side effects of Herceptin. Ginger Empey of Bakersfield has been taking it without stop since 1995. Phylicia who posts here on occasion will be starting her 9th year in October. Our Christine will be starting her 8th year in September.

To my knowledge all are in complete remission and enjoy an excellent quality of life.

Warmest Regards
Joe