her2 and Tamoxifen

[Linda Hunt]

H i everyone, I'm new here so please bear with me..... I have a question if you ladies are on tamoxifen and how you feel about it being her2. I've heard it doesn't really work for us and i've met so many her2 that were on it and recurred anyways. I'm on it currently. It will be one year in Sept. I'm seriously considering taking herceptin and going off tam. Is anyone on herceptin and tamoxifen? I was diagnosed 12/03 stage2a, grade 3, er+pr+her2+, 1.8cm and 1 sentinal node +. I wasn't given herceptin because it was in clinical trial only but I'd like to take it now as a precaution. I'd like to ask anyone's opinion about herceptin and tamoxifen. I've been banging my head against the wall about it.
cheers, Linda

[Cheryl E]

Hi Linda,

My understanding is that an aromitaise inhibitor (AI) such as femara or arimidex is better than tamoxifen for her2+. This is because with tamoxifen you still produce estrogen, but it is blocked from reaching the breast. By taking an AI, all estrogen production is halted in your body. Besides our ovaries, we produce estrogen in our adrenal glands as well. However, you must be postmenopausal to take this class of drugs. Don't know how old you are, but I was 40 and done having kids, so I had my ovaries removed! Easy procedure. The Herceptin studies are very promising and it is highly recommended if you are less than one year out of chemo. Herceptin is now standard treatment for women diagnosed with early occuring her2+bc.

[Debs]

Hi ya

I am on herceptine and arimidex as was on tam. but didn't work as got mets to the live. But combination of herceptine and arimidex is brilliant as really shrinking my tumors and most of my blood results are normalX! - I was pre-meno so have zoladex injections as well. Hope this helps.

Love Debs

[*_Linda_*]

sorry forgot to mention I was 39 when diagnosed and am now 41. I haven't gotten my period since feb'03. gnyo says my hormone production is that of a normal person. I think he said a number like 400. Eventho I don't have hot flashes or any of the post meno symptoms, he "thinks" my period may return if I go off tamoxifen eventhough it's been 1.5 yrs. The onc suggested arimadex. I like the idea of arimadex better than tamoxifen but am conserned my sex life will be obsolete since it stops estrogen production. I've only been married a year. Doubt I'll have kids, I don't have any. That's a hard one to give up, but to give up any other pleasure would be devastating for me at this age. I barely have any desire already on tamox!
I know this is a really personal question, but how is it with you ladies on arimadex? did you find it defferent sexually than on tamoxifen? It's not so bad right now. don't need any lubrication help.
thanks for your responses. They're very appreciated and thank God for this site!!
Linda

[mts]

Hi
I am still in "chemopause", but still considered premenaupausal. I take Tamoxifen for just 5% ER positive BC.
I have seen that many HER2's that are ER/PR positive eventually have their ovaries removed in order to reduce risk of recurrance. Are you menaupausal? If so, than I understand the AI's to be the drug of choice.

I finished chemo in March and began Herceptin in July. I continue to take Tamoxifen too. I will remain on the Herceptin for a year and at the 1yr anniversary of my chemo- we will re-evaluate whether I stay on Tamoxifen or go on AI.
You do need to consider bone loss w/AI's.

Don't bang your head about it! This website has tons of info and experiences from HER2's. I had to seek 3 different opinions regarding my treatment, until I found what worked best for me. Don't be scared to that if you need to!

Warmly, Maria

[AlaskaAngel]

Google "tamoxifen" and "AIB1" for important info to evaluate when considering taking tamoxifen for those who are HER2 positive.

AlaskaAngel

[*_Beth_*]

Hi Linda,
I was diagnosed in July, 2001 with a 3cm tumor and 7 positive nodes. I had a/c and taxol and 1 year of adjuvent herceptin. I have been taking tamoxifen for 3 1/2 years. So far no recurrence. I do have a problem with tamoxifen though. I am about to be switched. I am 42 years old and premenopausal. I have been getting very heavy bleeding. I had a d & c etc. and they didn't find anything troublesome. My doctor thinks that it is just too much estrogen. So a week ago I had a lupron injection to shut down my ovaries so I can take aromasin for 2 years. So far so good. I remember going through the same anxiety you are going through now when I first began tamoxifen. In my case it has been alright for now. Best wishes.

Beth

[Rozebud]

I'd fight hard for the herceptin and worry about the hormonals secondarily.

I'll post my story and what's happened to me this week in a separate post, but it's directly related to your question.

[Cheryl E]

With regard to sexual desire for me on femara it is real low. My husband and I joke that he needs to remind me. I also have vaginal dryness that is only a problem during sex and nothing that an over the counter non estroidal lubircant can't fix. I can be aroused, just need a little more foreplay than previously. (sorry for being so candid, but you asked). It's all about communication with your partner.

Cheryl

[*_Linda_*]

just wanted to thank eveyone that's replied. I read pretty much everything on this site and it's really helped alot. The oncs don't always tell you everything, so thank god for the internet because we can educate ourselves and ask them more thorough questions and keep them on their toes!
cheers! Linda