tamoxifen holiday

I actually feel quite insane given what I rationally know to be helpful about tamoxifen (it increases my survival chances as much as chemo), but I seem to be deciding not to take it. A temporary drug holiday, until I’m recovered from rads. I’ve been beyond tired, what with a cold, rads fatigue and tamoxifen general yuckiness. And when I go to take that tamoxifen pill? You know how it is when you just aren’t interested in a certain food? My body doesn’t want the tamoxifen near it, much less in it. (Yes, I know it sounds weird….but imagine experiencing it!)

So as not to go AWOL without communicating why, I did talk to my oncologist through his nurse. As always, they have their eye on the ball of cancer prevention. Their advice: “If you were my female relative, I’d say keep taking it. But if it really, really makes you feel bad, then do what you need to do.”

I felt SO good before I started taking tamoxifen, and it’s been downhill from there. Achiness (I’m talking sometimes barely able to walk in the morning stiffness, and joint pain), hot flashes, fatigue, nausea. No fun ‘tall.

Sheesh – the trade-offs between cancer treatment and quality of life? Nervewracking every time. I feel strange being noncompliant, but I do trust my body’s instincts.

Also, it’s not entirely irrational:

a) in the realm of standards of care, some oncs. start tamoxifen after radiation treatment is all done. My onc. and I argued that point. I thought it would be too much for me to do both at the same time, and lo and behold, I was right. I did say I’d do it his way and see. I saw, and now I’m going back to my one-treatment-at-a-time theory.

b) we don’t even know if I metabolize tamoxifen, so if there’s any point to taking it. Hopefully a simple genetic test can clear that up, but we’ll see what my onc. wants to do.



Filed under breast cancer, CYP2D6, quality of life, radiation, tamoxifen

5 responses to “tamoxifen holiday

  1. mariana

    well now busy blogger… good to finally catch up on your daily existence so thank you for doing this, otherwise I’d have to call you even more often than I do ! in headline form, picking up the pieces, thank you and taking a holiday all sound good to me. YOU GO GIRL. It’s the homestretch!!!

  2. Carol

    I appreciate your comments on that nasty drug. I am in the early stages of radiation therapy, and start in earnest the 26th of this month. My oncologist mentioned tamoxifen but I am leaning on not taking it. I am doing my research plus reading comments from everyday women on it, and it just sounds like the quality of life is not there. I had DCIS with solid and comedo nuclear grade (3) but stage 0 cancer. I have a friend that had DCIS 4 years ago and the Dr didnt recommend it to her, and she had pretty much the same thing as I. I guess when they keep doing research they change their minds for one reason or other. I dont know. Tamoxifen is a carcinoginic drug. Plus those serious side effects including strokes. I have that in my family with my father. Another reason I dont want it.
    Thanks for “hearing” me and Im sure there are alot of women who dont take it.

  3. Hi Carol – I hear ya, but for the record – and here’s my rational, non-intuitive side speaking – I have to say that for women in my shoes (IDC that spread to a node) I do NOT recommend what I’m doing. I really do believe my oncologist about the adjuvantonline #s- a survival increase of 9% (for me specifically) is nothing to sneeze at. It’s the same “value” as chemo, and chemo was hell, and tamox. is no fun but not complete hell. When I’m done with radiation, I am going to try tamoxifen again, and my thought is that if that doesn’t work then I’ll try an aromatase inhibitor.

    I went into my post-chemo oncology appt, with my parents, all prepared to argue against tamoxifen, and the doc reviewed the #s with us and they blew us away. Taking it was a no-brainer given my specific survival #s. Even with the risks of endometrial cancer and stroke. Because if I have a recurrence – it’s not a matter of “treating” it so that it goes away – at the outside, as I understood the explanation, with a recurrence I’d have maybe 10 years. So, if I want to live to be an old lady, and I most definitely do, then the tamoxifen or an ARI is on the agenda. Just not right at this specific moment, because I feel like hell with the combo of tamox. and rads fatigue. But when I’m up to it, I’ll do it. This is just temporary.

    But if I were in your shoes I might very well not take it, but with DCIS, I don’t know what the recurrence risks are. I assume they’re quite low? I hope! Let me know how it goes.

  4. Pingback: bad news for my mom :( :( endometrial (or is it uterine?) cancer « Imagine Bright Futures II

  5. Pingback: tamoxifen and I are NOT the best of friends « Imagine Bright Futures II

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s