Monday, July 09, 2012

Tamoxifinished

Okay, okay, so it's a cheesy play on words, I know.
But, I've been meaning to talk about it and now seems like as good of time as ever.

Last year, in December (after getting through radiation) I started taking tamoxifen. Tamoxifen is something most people have heard of, but if you haven't or you have but aren't quite sure what it does, let's take a time out for a mini-lesson.

Basically tamoxifen is used when people who are pre-menapausal (or postmenopausal women who can't take an aromatase inhibitor) have estrogen positive (er+) breast cancer. If you are er+ this means that your cancer actually feeds on estrogen (it should be noted: you could have breast cancer that was er-, in which case you wouldn't take tamoxifen). In breast tissue, tamoxifen binds to estrogen receptors which means estrogen does not. Which means, should you have any cancer cells still floating around after treatment, they will not get estrogen to feed off of.

So, at the start of December I started taking tamoxifen. The plan was to take it for 5 years. But, December last year was a rough month - I had gotten a major infection and resulted in surgery right before Christmas. Naturally through all of this, I felt like crap. And January came and while I wasn't in so much physical pain, I was still feeling like crap.

I talked to my doctors about it. Okay, I didn't so much talk about it as I sat in the office and cried and cried and tried to explain how I was feeling. So we added an anti-depressant to the mix. Which honestly? Made me feel worse. And so we upped the dose. We added a sleeping pill. And when I was still feeling bad, and still not sleeping, but then stopped eating, we added some supplements because I started to lose weight quickly. And things weren't getting better. I was struggling. Very much so.

So I temporarily stopped taking all the medicines. Yes. All of them. To give myself a break. And in only a few days, I was feeling much better. At this point, we decided to restart the tamoxifen, but to start it out only taking it every other day with the hope it would be easier on me and the plan to take it daily starting in a few weeks. So, I tried it. And pretty quickly things got worse again.

So in March I made (what was a terribly difficult decision for me) and decided to permanently stop the tamoxifen. At that point my doctors switched me to fareston. I was told a)it hasn't been studied in women in my particular case, but it has in other breast cancer situations. B)It's not as effective as the tamoxifen but it's pretty darn close. C)It could have the same side effects as tamoxifen but it could be more gentle.

The first few weeks I was on it I definitely noticed mood swings. And it made me feel on the angry side. But after a few weeks it seemed to taper out.

And now that I'm here? I do not regret for one second stopping tamoxifen. I wish I had done it sooner. The fareston is so much better for me. Today I know we are doing the best thing for me. It doesn't look the same as what so many others are doing, but as one of my doctors said to me back in March when I was trying to figure out just what to do "You have to live your life. Not me, not your family, not your friends. It doesn't matter what others are doing or what others want you to do. You need to figure out what works for your life because you are the one who has to live it. As your doctor, it's my job to support you in whatever decision you make and I feel pretty sure that everyone around you will support you too." {side note: isn't that awesome advice just in general? I think so}

So, there's the story of tamoxifen, no more tamoxifen, and fareston.

2 comments:

  1. I'm glad the medication is working for you. Big hugs!

    ReplyDelete
  2. Brandie...
    You have an AWESOME doctor. And, you are spectacular at advocating for yourself, for knowing your own body better than anyone else....

    Good for you for being pro-active... I was petrified of going on tamoxifen. I got to buy my way out of that when I opted to remove my ovaries post-chemo. The chemo threw me into menopause and the oopherectomy sealed THAT deal. Oncologist agreed I could go straight to femara. I had issues in the beginning but now they are minimal.

    Hugs to you!!

    ReplyDelete

Seeing your comments makes me smile! Thank you so much =)