Need help in making a decision

[SusanC]

Hi everyone,
I need advice. I just started taking tamoxafin about 30 days ago. I have have developed carpal tunnel. I don't know if it is a combo of tamoxifen and herceptin or what. I am considering stopping tamoxifen all together. I feel like I need estrogen! My tumor was PR+ and ER-. My hips hurt, my hands hurt, my feet hurt. My onc. says it is from estrogen deprevation. I am only 44 but I feel 84. Have any of you gone cold turkey? I would like to stop effexor too. Of course I am taking that to help control hot flashes brought on by chemo and tamoxifen. I just want to be normal without drugs.
Any advice would be greatly appreciated!

[Grace]

Hi Susan,

I stopped taxol and carboplatin after two rounds (different from what you're proposing to do) because I thought I would die. I couldn't have gone on and although I occasionally have a twinge that I shouldn't have stopped, I honestly don't know how I could have continued.

A very good friend, a very very energetic woman of 74, stopped tamoxifen after a month or so. Said her body told her to do it. But she also refused chemo. She was not HER2 positive.

And I just heard of another friend who is planning to stop one of the hormonals after some three years or so (in her mid-40's) with Stage 3, many nodes involved. She did extra everything when she was first diagnosed so I know if she's stopping it's because she can't go on.

Can you talk to your doctor to determine if there's another drug that might work as well?

I understand from my own case how difficult a decision this is; whichever one you make, you have to feel comfortable that it was the only decision for you.

Good luck in coming to the right decision.

[mts]

I believe that "being normal" with cancer is possible but not easy...

If you get off the Effexor... DO IT SLOWLY !! I discontinued Tamoxifen (I am <10% ER+ and PR-) and I have been weaning myself off the effexor. The withdrawals from the Effexor are nasty. Dizzy, dizzy, dizzy. I am down to 1/4 of a pill and if I miss one day I feel awful.

You stated that you are ER- and PR + What % positive are you ?

Of course you miss your estrogen. I do too (I am 44 and Dx'd at 41). Going into "chemopause" was difficult for me emotionally and physically. But that was a price I was willing to pay in order to rid myself of my cancer. For me, my % of ER/PR positivity dictated whether I needed Tamoxifen or not. After 2 1/2 yrs of it, and 1 yr of Herceptin, my onc and I concluded that Tamoxifen was not really going to provide me with a better outcome. To some oncs, 10% ER+ is equal to being ER-
I know we are all different and some of us give up more than others in order to stay well. Look at your percentage of positivity, your previous tx and discuss it with your onc.

You may also want to reconsider getting off Tamoxifen once you read the side effects (real and perceived) of Herceptin. Joint pain and muscle tightness are just a couple of the MANY symptoms recorded on this site. I don't know if your carpal tunnel symptoms are caused by the Tamoxifen or just the fact that all the stuff your body has been through just enhances something that may have already been there.
For me, every little pain or twitch was cancer's fault- but the reality is that you tend to notice things now more than ever because you know how serious this cancer can be.

Hang in there !

maria (MTS)