I quit my Tamoxifen

[LindaMHR]

I quit taking my Tamoxifen after two months, because the hot flashes interfered so much with my sleeping (I have an oncologist appointment in a few weeks). I was stage 1, with a 1.1 cm tumor (segmental surgery, and radiation). I was leading a highly stressful life, with very poor (short) sleep and many ten or twelve hour work days. I am now retired. I eat very well, and take supplements and exercise (walks, yoga) every day. The doctors tell me they can't quantify lifestyle changes so don't consider those. But my sleep had become so poor with Tamoxifen, that I always awoke at 3 or 4 and was most often not able to go back to sleep until the next night (so, six hours sleep at most). Even if I napped, it amounted to ten minutes or so.

My question -- it seems to me many stage one women (no nodal involvement) would quit their Tamoxifen, if it gave them hot flashes so badly at night. (I already was having hot flashes somewhat, being on HRT till I was diagnosed in the spring. They became much worse, especially at night.) The oncologists are very insistent about Tamoxifen, and I'm guessing will be (next) insistent about aromatase inhibitors. I just want to live a good life, and not be exhausted because I'm not sleeping. I don't want to take hormones. My life since retiring is vastly different (and relaxing).

Can you comment on this?

[LindaMHR]

Hi Jaydew

Thanks for your comment. My friend got put on an anti-depressant "so she could sleep" (due to hot flashes). (Certainly, being exhausted resembles depression, I guess!) I am sleeping better -- still awaken around 3, but return to sleep (eventually) which I'd been unable to do with the Tamoxifen. Still having hot flashes, but not so severe at night. Since my lifestyle has changed so much, this is my hope. At some point, quality of life must rule the day -- but the oncologists (who don't inhabit my day) are looking at stats, they want their stats to be good no matter what. It's kind of a competition, almost. We have excellent care (here in BC) but they do not deviate from the program, is how it feels to me.

Thanks again
Linda

[Jaydew]

I had stopped having hot flashes after stopping HRT several years ago but found that taking Tamoxifen after my Lumpectomy 4 months ago the problem recurred.  However, the solution for me was to simply take Tamoxifen after my evening meal instead of am.  Hope this works for you too and please think carefully before going down the Effexor route which could cause you many more problems.  

[LindaMHR]

And thanks for your comments as well!

[LindaMHR]

Thanks for your note! I am just stage one (or as I like to say *was* stage 1)  and my life is so different now (now that I've retired). Otherwise you sound similar (for details) -- I used to be a teacher (grade threes were my last assignment, I just am hearing your "little girls" comment) and I *loved* my kids in a needy neighbourhood, but I seemed to be working more and more and more -- so now I just volunteer. I guess right now (re "decisions") I am arming myself trying to look the oncologist in the eye in this meeting coming up. They are very forceful. They did give an actual percent when you boil it all down -- it was a few percent difference (3 or 4).

More than six years! Fantastic....  That's my view, that I must 'put away doubt', after I have this meeting. There has been plenty of controversy about Tamoxifen, too. But that wasn't evident at first -- just the poor sleep drove me to it (to stop). I'm not interested in taking anything else (besides vitamins, that sort of thing). I have a lot of arthritic pain from time to time. Sleep helps!

Thanks again, have fun with your kiddies,

L.

[often]

Hi...

I took Tamoxifen for 3 months before the joint/bone pain was so bad I couldn't bear it any longer....after another 3 months, when all the pain was gone I agreed to try the Arimidex...I took that for 3 weeks and quit...the side effects were actually worse for me than the Tamox.  Naturally, my onc did not want me to stop the Tamox, but finally did agree that there is something to be said for "quality" of life.  He was fairly resigned when I quit the Arimidex.  

I was Stage 2, 2.1 centimeter, lumpectomy, re-exision for margins, node negative, ER + (can't remember the PR, and can't find my reports). 4 rounds of AC and 33 rounds rads.  

Effexor does help with flashes and moods, but it has its own set of issues (increased appetite, weight gain being common), and can be somewhat addictive.  

I would ask the onc the survival rates with the tamoxifen and without it.  You may find that it is not that all different.  But, as I have said before, ask for absolute numbers.  They will tell you that Tamoxifen will increase your chances by 50% or some such number...but if your chance of recurrence is only 5% that is a 2.5% improvement.  Discuss other ways of managing your side effects.  I do know that several women in the support group I attended took half in the am and half in the pm, which enabled them to "even out" some.  Or as lhughes states, just changing the time of day completely might help.

In the end, it is your body, your life, your decision...make it an informed decision, then never look back with "what if's" and "if only's".

I am cancer free for more than 6 years....

[lhughes]

PS...had sleeping issues, too.  Still have some bad nights, but mostly due to being awakened by one or two little girls.  Some nights I can get back to sleep, others are still pretty bad.

[lhughes]

I'm on tamoxifen (for stage 3 cancer) and they put me on Effexor for the hot flashes and pretty serious mood swings.  Hot flashes have receeded, but weight gain is now an issue.

My mom was also stage1 and took tamoxifen for 5 years.  the lucky duck didn't get hot flashes.  makes me want to beat her over the head.  (not really, but you know!)

Best to consult with your onc about what to do to help the symptoms, especially since they say taking tamoxifen will prevent a recurrence which is most likely to happen within the first 5 years.  That would be for ER/PR+ tumors, that is.

Oh, and I had to take it in the morning with food, not at night without like I was taking it.  Strange how that little change made the difference.

Good luck to ya!