Starting Tamoxifen - Spring 2015

Hi- I'm just checking in. Two months in. Lots of hot flashes, which wake me up.

Then I read the articles/studies on how light in your bedroom, even a streetlight through the window, or light coming in under the door, can affect the efficacy of Tamoxifen. And it's all jumbled up with melatonin. Anybody reading this? Anybody's MO ordering/ suggesting melatonin? Not for the sleep benefits but to counteract the lower melatonin levels caused by the light?

Curious how everybody is handling this. The info, and the fear.

I am 2 months in as well. Hot flashes wake me several times nightly. My MO didn't suggest Melatonin but I started taking it as a substitute for Ambien and find it just as effective. I have also read about it's positive relationship with Tamoxifen so I think it's a win-win. I agree with ksusan, too, in that I try to think of the hot flashes as a good thing in that the Tamoxifen is doing its job. My MO did give me a Rx for Effexor - a antidepressant, which has been shown to reduce hot flashes - but I am too scared to try it...I'm worried about more side effects and they also say it's difficult to stop as the withdrawal is bad.

regarding the hot flashes as proof of Tamox working. Is that anecdotal speculation or has this been finally settled by trial?

I've seen it here (on the BCO pages, not the discussion board) and elsewhere. The index in the new Susan Love edition is not great, so I'm not finding anything by checking there.

Thanks Angie- I know what you mean. A lot of sheet changing.

While I had a ton of SEs from Tamoxifen, hot flashes were not one of them! So weird!

I've been taking a half-dose for just under 4 weeks now. The same SEs I had before are creeping in. So far they aren't horrible, though, so I'm continuing on.

Hot flashes are the most frequently experienced SE of tamoxifen and have been suggested to be positively associated with treatment outcome on tamox. I have not come across substantive evidence of HF being associated with positive treatment outcome, despite reviewing multiple published papers. So far, I have not found evidence to support the association of serum concentrations of tamoxifen and its metabolities with hot flashes. There are some studies of post-meno women that establish linkages with increased serum levels causing a greater frequency of hot flashes, than the number of hot flashes they experienced pre-tx.

SEs that you were not experiencing pre-tamox and that can be ruled out as having an alternative cause (interactions with other drugs you may be on, other medical conditions, environmental exposure etc.) demonstrate that you are metabolizing the drug, as also would an exacerbation of pre-tx hot flushes. The absence of SEs in most cases does not conversely indicate a lack of drug response and clinical outcome (you could just be lucky to not experience SEs). Individual variability exists in all drug responses, both therapeutic effectiveness and adverse side effects.

After I looked into tamox pharmacokinetics and CYP2D6 alleles for you, Jackbirdie, I had mine tested. It turns out I am an ultrahigh metabolizer of tamox. For my case, the very small benefit I would derive from tamox wasn't worth the detrimental QOL SEs I experienced on only a 5mg dosage. Over the 5 months I tried and stopped taxox twice, I never once experienced a hot flash.

Individual physiological factors, including age, other health conditions and diseases, exercise, nutrition, and circadian rhythm, can also contribute to individual variations of the pharmacokinetic and pharmacodynamic properties of tamoxifen. Just like our cancers are all individual, so is our drug response. We all have different genetic polymorphisms of drug-metabolizing enzymes and metabolite transporters, which can affect the metabolism of tamoxifen and modulate concentrations at the target tissue. I know many of you are looking for reassurance that it is working. The therapeutic dose is a balance of achieving the desired clinical outcome and balancing the toxicity and side effects. Those SEs you are experiencing mean you are metabolizing tamox. Although it isn't frequently done with tamox, severe SEs can be modulated with a change in dose. The good news is that tamoxifen has been studied in large populations for years at 20mg and has a solid track record. I wish you all well in tolerating it, so you can put this bc experience in your past and move on to new exciting experiences in your lives.

SummerAngel, are you experiencing minimal eye changes this round?

Downdog- thanks as always, for your clearheaded research and explanation. I sure hope it's working. My MO gave me numbers indicating Tamoxifen would be twice the benefit of chemo in my case. He was not willing to test the CYP allese. He said he would recommend Tamox anyway, and if I couldn't tolerate the drug, we'd look into alternatives (AI + OS). I'm 58 and my estradiol et al was just over the level he was comfortable with. Regardless, he feels l'll be switching to an AI in 2-3 years.

Thanks again. Great to "see" you!

Tinkerbell, which doc prescribed the tamox - BS? You should be provided with some estimates of your relative and absolute risk with and without tamoxifen, in order to make an informed choice. There are lots of women who tolerate tamox well, it's not just all the scary stuff posted on threads here, and there is no way to predict into which camp you'll fall without trying it. If you do make the decision to take it, you can always stop if the SEs are too much for you. We all have different risk benefit matrices, based on a variety of individual factors. Was it a single focus of ADH with no calcifications that was small enough in size to be completely removed by the CNB? ADH risk is stratified and a single focus with no calcifications would put you at the lowest risk level, but nonetheless, it still presents an elevated risk of developing bc. Talk to your Dr to get more info. I've had 4 lxs, including a fibroadenoma that had a tiny amount of ADH in 2008. I did not take tamox, just surveillance with more frequent screening and MRIs. My 2014 IDC was also encapsulated in a fibroadenoma, same breast, different quadrant. There could be additional ADH threads, but here's one you may want to check out to see what choices other ADH women have made. Good luck.

ADH Club

Hi Everyone

I'm new to this board. As you can see in my specs below, I had a lumpectomy for mucinous carcinoma Sept 1, margins clear, lymph nodes too. Saw a MO last week who talked to me about Tamoxifen for a year, then AI, because I'm pre-menopausal (although having hot flashes, so probably starting meno now). Of course, the list of SE's are freaking me out. I'm already a tired person (have been since adolescence). The worst look like the possibility endometrial cancer (!) and blood clots/stroke. I think stroke scares me more than cancer. Don't know what to do. It's hard to feel like I'd do anything to not have it return when I'm already trying to wrap my brain around having it at all since results all came out so good.

Has anyone used Zoladex or Lupron to tip over to full menopause so they can go straight to AI? This is what my partner thinks I should do. I'm 50, so obviously won't be having children. The site I read about Z & L said to weigh whether the meno side effects are worth it to me, but really...I'm almost there and we're all going to go there sometime. I think I'd rather deal with already inevitable SEs than potential horror with Tamox. Of course I don't know about SEs or risks with Z & L either.

Thoughts? thank you!

thanks Jacbirdie! How do you tell how highly ER/PR + you are? I am taking Effexor. From what I've read, it sounds like that helps Tamox SEs.

Notdone....does the Effexor help? My MO gave me a Rx for it & I filled it; however, I've been hesitant to try it simply because I'm afraid to take another prescription. Also, I read that it's hard to quit taking it. I suffer from pretty bad night sweats so the thought of those diminishing with Effexor's use sounds tempting. Did you notice any adverse affects from the Effexor? On another note, I found my ER/PR percentages on my path report when I asked for a copy.

I have, yes, heard generally, that people (anecdotally, of course, which is a nice way of saying we are crazy) do suffer fewer SEs from Teva.

Jackbirdie, it's good to hear that at least I may not be completely crazy! I'm with you, why take chances. If they don't have TEVA I'm not taking it. We go through enough why add another miserable body part to the mix.

I am going to talk to my stepson about the supplier issue. He works for TEVA but in the respiratory division. And I didn't even know he worked for them until I saw him at the grandsons football game on Sunday and questioned him about different manufacturers. When I mentioned TEVA he said "that's who I work for"! Too bad he's not in the division I need!

jackbirdie and Angie, thanks for your answers about ER/PR level. Looks like mine's 75% (not that I understand what that really means).

Angie, I had NO side effects with effexor. I used to take zoloft for depression and had awful constipation and insomnia for a couple weeks. Nothing with effexor.

Got my oncotype results today. Dr. just ordered the test on thursday! My score is 14. Chemo not in the picture! I'm not sure I would have done it anyway considering my results from surgery. Any idea if this score would affect radiation recommendations