Starting Tamoxifen - Spring 2015

Jackbirdie

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.

ksusan

My ND has me taking 20 mg of melatonin to increase melatonin, not to improve sleep. I am trying to reframe the hot flashes--since they are associated with Tamoxifen being effective, I thank them when they arise.

Angiel

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.

Jackbirdie

Thanks KSusan and Angie-

Angie how much do you take?

K- I sent my shink (my mo is mum on the subject) links to articles you've shared in other threads. He is still against me taking time released melatonin but considered my medical history, dx, etc and has relented as of yesterday. He said to take 6 mg immediate release and buy a black light for the bedroom and hallway.

He says no white light at night. I guess we got him on board. He apologized for the large dose of 6 mg but said not to worry. It would be ok. Really?

This guy is a Yale educated MD PHD. He has published research. Not a slouch. He freely admitted he hadn't studied melatonin before but did so at my request. I appreciated that. I have no clue however, where and how he came up with 6.

Jackbirdie

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

eheinrich

I don't get hot flashes just horrific night sweats. Makes me glad I'm not currently sharing a bed. Once a night I have to move to a dry spot on the bed.....gross

ksusan

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.

Angiel

I take 6 mg (2 tablets, 3mg each) of quick release melatonin each night. Then I read for 30 minutes or so & it kicks in, making it a lot easier to fall asleep.

Some nights I wish I had my own bed too! It would be nice to move to a dry spot! I feel like I spend a lot of time these days changing & washing my bedding...

Jackbirdie

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

eheinrich

Night sweats are very tough on the environment. I save water in so many ways except this.

SummerAngel

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.

Tinkerbell49

Hi everyone

I too have been prescribed tomoxifen and I haven't pu from cvs. I was diagnosed with adh at core needle totally benign at excisional biopsy nothing found. My question is did anyone start with adh and chose to wait? I'm trully scared of all the se"s my mo says not everyone gets the bad ones. Am I being fullish if I don't take it?

I'm 49 and premenopausal. I'm even thinking hystrectomy with ooperectomy. I have been looking for a Thread on tomoxifen. Glad I found it at aleast there has been some positivity.

downdog

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?

SummerAngel

Downdog, thanks for asking! My eye problems have just started. I had no pain in my eyes, blurry vision or watery, red eyes until two days ago. I noticed pain in the backs of my eyes starting two days ago and blurring with watery red eyes as of yesterday. So far the blurring is not too bad, so I'm ok with it. I plan to continue with the same dosage until/unless the eye, pelvic, or joint issues become so extreme they interfere with daily living. I have an appointment with my ophthalmologist (and gynecologist, and rheumatologist) in two weeks, we'll see what happens.

Jackbirdie

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!

Tinkerbell49

I guess I need to start a thread on adh and tomoxifen. I just don't know how. Sorry I guess I'm in the wrong place. I just need some insight on this subject. Adh is not cancer but it most definitely could be. It's a very hard decision.

downdog

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

Tinkerbell49

Thank you downdog I am in the adh club but most if not all have chosen not I take it. I had a cnb that showed 2 micro foci of adh. I had a calcification cluster. The excisonal was completely benign. My mo didn't think it was a big deal according to the Gail score, but I met with a genetics and due to my family history with colon cancer no breast ,ovarian or uterine cancer. I was given a higher % . So do I go by the Gail model or by the genetics who I may ad had put 2 biopsy when it was only considered one. I met with the radiologist he said that was a rare find. That I should be ok with follow ups. This is a very hard decision or maybe I'm not taking adh serious enough.

notdoneliving

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!

Jackbirdie

it's a very difficult and personal decision. Keep in mind there are side effects with the AIs too. Some people go back to Tamoxifen because they can't tolerate the AI they are on. Everybody's different, and reacts differently. I am 58 and my blood tests showed I still wasn't through menopause completely, so the plan is to do Tamox 2-3 yrs then an AI for up to a total combined 10 yrs.

also each case is so different in terms of the estimated benefit. Your doctor should be able to tell you approximate percentages. In my case, MO said Tamox reduced my chance of recurrence from 30 to 20%. That's a lot to me. If it was 2% maybe I wouldn't think it was worth it.

How highly ER and PR + you are matters and newer tests are being done to determine how well an individual metabolizes Tamox. Also wise to become aware of other drugs you may be taking that interfere with it. Two examples off the top of my head are Wellbutrin and Benadryl.

Good luck.

notdoneliving

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.

Jackbirdie

Notdone- sometimes it's detailed in the original path report from the biopsy. Mine only said "highly", but that could have meant anything. My MO nurse found it buried in the Oncotype dx report. 85%. Not THAT high. I think they should put it on all the path reports, because not everyone gets the Oncotype

Angiel

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.

kjohn

Hello everyone!

I am new to this forum but not new to the BC/Tamoxifen life. This discussion is exactly what I am looking for. In the original post Mid Life Crisis wrote that one of the key areas of interest was the manufacturers of this drug. Here is what I have been going through and keeping very close track of during my 14 months taking it. My SE's have been very minimal as long as I was taking the Tamoxifen made by the manufacturer TEVA. Over the 14 months my pharmacy has not been able to get the TEVA brand 3 times. They always replace it with the Watson brand. The first month they did that I didn't give it a second thought until after 3 days of taking it I developed a horrible UTI. I still didn't put the UTI together with the brand, got treated for it and went on. Three months later again they filled my RX with the Watson brand. Same thing happened. I went to my oncologist who told me it has to be a coincidence. Went to a urologist who checked everything, said I was fine and didn't feel that a "pill" could cause a UTI. Fast forward to this month. Same thing. Watson brand Tamoxifen because TEVA is out of all Tamoxifen. Horrible UTI which I had to go to urgent care for over the weekend. They prescribed Bactrim and now I am dealing with the yeast infection from it. Had a long discussion with my pharmacist who also says that there is no difference in the pills he gets from TEVA or Watson. I have decided to stop taking the Watson brand and am waiting to hear from my oncologist to see if I can get a prescription sent to a pharmacy who may have TEVA brand in stock.

Has anyone else had this issue? I swear these doctors and pharmacists think I am insane!

Jackbirdie

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

I just checked my bottle. My only SEs are hot flashes, severe and constant, at night, and possibly depression. But no UTI. Suppose it affects everyone differently.

FWIW, I have been getting Mylan manufactured, but they also have Watson. They said they get the Teva only occasionally due to supplier issues (this is a recording).... I asked them to put a permanent note in my record not to fill with Watson. Just in case. I can probably live with what I get now, but wouldn't want it to get worse.

kjohn

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!

ksusan

I feel fortunate that at least initially, I don't seem to have a different experience with Teva vs Mylan.

notdoneliving

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

Jackbirdie

Notdone- fantastic news onthe single digit Oncotype! Doing the happy dance for you!

🎉🎉🎉💃💃💃💃💃🎉🎉🎉