my 2 cents worth

[michele u]

The more i think about the 2 year Herceptin, and listen to all the dr. say no, they will probably decrease the length, not increase. That is true with chemo. Herceptin is not a chemo. It is a monoclonal antibody. this makes it DIFFERENT then other chemo. I can see the agruement that your body might get resistent to it, but i don't think they should put it in the same category as chemo. What does everyone else think?

[Rozebud]

I think they'll eventually get to the minimum time you can take it that maxes out effectiveness, in order to preserve heart function.

[Lolly]

Hi Michele; I think your doctors are just being very cautious, as it's probably not just the possibility of resistance to Herceptin that's making them say no, but the heart issue. Also, another possibility comes to mind, one that's not discussed often but which I've talked with my onc about: Being a monoclonal antibody, Herceptin does arouse the immune system, and if there's no evidence of cancer to fight what will the immune system do then, being as it were "All dressed up and nowhere to go"?! There is the potential for developing auto-immune diseases as a result of this therapy. That was also one of the "unknowns" regarding the vaccine trial in Seattle, that the vaccine would also stimulate the immune system and could cause problems in that way.

I know it's galling for you not to get more Herceptin now. I can imagine the frustration, but when I first started on Herceptin for recurrent disease, my onc and I talked about the possibility of being able to take "breaks" from it; so far I haven't been able to do that. Dr. Salazar even raised that issue at one of my vaccine appts., that maybe the vaccine would enable me to have a long enough remission so I could take a break. Believe me, if my onc ever feels it's safe for me to do so I will, as there's some evidence that given a break, the cancer cells will "forget" the exposure to the agent if given enough time, and respond again as if it's new to them. This is the theory behind using chemos over again when they've been successful, and it's been at least a year since the last use.
With that in mind, you shouldn't have to feel you're just "waiting" around for recurrence to get Herceptin again; I'm hoping for you that the thinking will change on this and you and others like you at higher risk for recurrence will be allowed to get Herceptin periodically, as kind of a "booster" to your previous doses. Call me a crazy dreamer, but ask about that possibility. Don't give up your fight, it's your life!!!

<3 Lolly

[sarah]

Interesting. I'm personally terrified that here in France they may say i've had enough Herceptin and will take me off it. perhaps irrationally I believe that if I'm taken off Herceptin, it's only a matter of time before the cancer will spread somewhere else, particualrly since I'm a triple positive (HER2+++, ER+, PR+). It seems that for us triple positives we should take Herceptin and AIs at the same time or else dropping one, causes the other to flame up.
Here in France, one's lucky to find soemone who understands what HER2 is.
Sarah

My onco said that they are trying to get it to 6 months as apposed to 1 year!

Just my .02, I just started my year of herceptin after I finihsed my 12 taxol with herceptin. does anyone get side effects from just hercepting?

Thanks,
Randi

idc, stage 2, no nodes, er/pr+ her2neu+, lumpectomy, 4a/c 12 taxol/herceptin, then herceptin, every 3 weeks for 40 weeks.

What a wonderful sensible post! Wish we could 'sticky' this one from you )

I became NED with my minimal systemic mets after just two months of Navelbine/Herceptin. It was my understanding at the time that I would always be able to go back on this successful combination. That was three years ago! ( I never count my brain mets in that, ofcourse. )

big hugs to you,
pattyz

[Lolly]

Patty, thank you, but I wouldn't want anyone to take what I say as gospel! Are you still on Herceptin mono? Three years NED is fantastic, and yes, I understand about not counting the brain mets in there as from what you and our other brain mets survivors say it's treated as a separate issue. Navelbine has worked well for me twice now, and I'm now on my third round of Navelbine/Herceptin and showing improvement 2 months into a 6 month schedule. Big Hugs back to you

Randi, I've been on Herceptin mono-therapy a few times in between chemos, and yes, had side effects while just on Herceptin. These included flu like symptoms the eve of treatment with achey joints and muscles/slight fever, tiredness, and the infamous runny nose we've all complained about. In the first year of being on Herceptin these symptoms were a pretty regular companion of each treatment, lasting a day or two, but gradually diminished over time to just a little tiredness the day of treatment, and the runny nose for a couple of days. Good luck with your year, you'll find it much more tolerable without the chemo!

Sarah, if you're Stage IV, Herceptin indefinitely is considered Standard of Care; they shouldn't be able to take you off of it without your permission. I am personally hormone negative and don't know much about the AI's except what you all report, but I don't think it's irrational to expect that in Stage IV disease, Herceptin basically puts the brakes on any further spread. I believe that's why my disease has never spread outside of my lymph nodes, as far as we know. If I were to ever consider taking a break from Herceptin, it would only be if I had a "clean-as-a-whistle" PET scan, and then after a lot of soul searching!

<3 Lolly

[TriciaK]

This thread has been very thought-provoking for me, and I really appreciate all the comments, and especially Lolly's evaluation of long-term herceptin. Being a 3rd-timer and stage IV, I had hoped to be on herceptin indefinitely, but have just been taken off it because of a much lower echo score. THe cardiologist ordered a MUGA to double check, and I should have that score soon, but my oncologist felt we should stop herceptin now. I have felt fortunate to have been on the hercptin for 15 months, since I started out right after a heart attack.And my last PET showed NED! I also have fibromyalgia, which seemed to go into remission during the six months I was also on navelbine. It is back with a vengeange now, and I wonder if what has been suggested is indeed true, that the herceptin can allow the immune system to over react, which would produce arthritis and fibromyalgia. It is scary to go off the herceptin, but maybe a break will be a benefit. I feel much better about the whole thing after reading all these and other comments. What a blessing you all are and have been! Thank you, and have a wonderful Thanksgiving. We truly do have a lot to be thankful for! Hugs, Tricia

No, Lolly...... when I say I was NED and quit after two months, I mean BOTH Herceptin and the Navelbine. I have been on NO other tx's in the past three years, other than for my brain mets, now with the Temodar/Xeloda.

So happy that you're still doing well!

xoxoxpatty