Anyone not have a problem taking Tamoxifen

ann273

I have been on tamoxifen for 11 months now and I have absolutely no side effects or issues with it.

Professor50

I am just finishing up my first month. It has been close to feeling like I am doing nothing. Oddly enough the first week I had the best sleep I have had in years. (Eventually I got back to my typical sleep which is not great but has nothing to do with tamoxifen). The only real se was constipation the first couple of weeks but even that has now subsided. So far so good. I keep thinking about how high my ER+ percentage was and how lucky it feels to have a drug that targets exactly that. When I take my pill at dinnertime each evening I give an evil cackle and think: Take that cancer! BWA HA HA HA!!!!!! Don't even THINK about setting up shop here again!!!

CidneyI

I started the Teva brand Tamo at the start of Nov 2014. I experienced hot/night flahes almost immediatly to the point where I could not sleep at night and was embarassing at work. My oncologist prescribed Effexor which has helped tremendously, in fact, I feel fantastic. The hot/night flashes are about 90% better and not as intense like a blow torch being pointed at me. I became consitpated from the very beginning and have tried various things but nothing that is working on a consistant basis. Other than that, all is well.

Rose_d

I have been on tamoxifen for almost 2 1/2 years now. In the beginning I had some hot flashes and leg cramps but those have all completely disappeared.

I am being monitored for a thickened uterine lining (which is fully expected with tamoxifen) and did have to have one D&C for a huge polyp a year ago, but otherwise don't have any noticeable side effects.

Best of luck to you!

Rose

katcar0001

I have been on it exactly a week, and I take it in the morning. I was scared to start taking it. Only symptoms are night sweats which I have had off/on for years anyway, and I rarely sleep well, so nothing new there. So far, so good. I would like to get the test to see how well I metabolize it, but it's not done where I live.

Blownaway

Professor50 - Oddly enough (and knock on wood) I've been taking Tamoxifen since last Friday and I'm sleeping better at night.  I've been having hot flashes/night sweats since March when diagnosed and told to stop Premarin.  So far, haven't noticed that the h/f's are increasing any - if anything, it seems to be lessening but the weather has turned cold here this week.......

So far, so good - not complaining yet.

Lisamarie6864

Hi all!

I am on my 3rd month of Tamoxifen...so far..so good. Had a few warm flashes first month and some muscle aches. I walk most every day at least 3 miles and that really seems to help everything from SE's to promoting healing and overall sanity . I take the Mylan brand and take it 8pm (put a alarm on my phone). I am premenopausal at age 50. I use to have my period almost like clockwork every month, since my initial surgery last October I have had period every other month.

Good luck to you all. ;

Birdgirl11

So good to read about so many having few side effects with tamo! I start later this week and have been dreading it! Thank you for sharing your posts - they are so encouraging! Maybe I will be like many of you and get lucky with few or no SE's

Professor50

I just wanted to add my favorite post-BC moment that is tamoxifen related. I met with my MO and we went over everything that has been going on since I last saw her. She has always been kind of...not gruff... but not super warm either. After we went over blood work, my tamoxifen experience, and she went through a long list of side effects, she just stopped and said, "You seem to be tolerating it very well." and then she stopped and looked in my eyes and said, "I am just ecstatic about how this is going." I hope everyone who ever has to have a MO gets a chance to hear that person say the word ecstatic.

Anonymous

I took tamoxifen for the full 5 years, tolerated it very well with very minimal SEs if any. I would just recommend a yearly transvaginal US to monitor both the ovaries and the uterine lining while taking tamox.

anne

bratscher

Hi, I have my first visit with the medical oncologist tomorrow. I had DCIS, ER+/PR+ but so tiny that the lumpectomy was totally clean and I was allowed to skip radiation. I suppose I should be grateful for that (and I am!), but I am apprehensive about tomorrow's visit. I am guessing the MO will start me on tamoxifen, and I hope I will have y'all's good fortune in not having any major side effects.

I do have some questions, though:

• prior to diagnosis, I was taking progesterone for perimenopause symptoms. It helped a ton, with both physical symptoms and anxiety. At diagnosis, I was taken off progesterone and offered Effexor (for hot flashes, even though I didn't have them). Effexor didn't do a thing for me, and had side effects of its own, so I decided to quit. The past 4 days have been hell, but it's slowly getting better. Does tamoxifen always throw you back into a state where anti-menopause meds are necessary? I really don't want to take Effexor ever again.
• Is there ever a possibility of resuming HRT (especially progesterone) with tamoxifen?
• If progesterone is off the table, is it ok to ask for meds to help with anxiety? I don't have the faintest idea how to ask for anti-anxiety meds. I don't want to appear drug-seeking. I am just hoping to begin this next (and hopefully final) phase of treatment and have it go as smoothly as possible.

Thanks in advance.

Blownaway

bratscher - I don't think your mo will think you are drug seeking. They never bat an eye at anthing Ive asked for. I was given a script for effexor for hot flashes because I had to give up my HRT when b/c was diagnosed. I tried it for 2-3 nights and had insomnia and extreme jitters. Now I am ready to try it again for the hot flashes - Ive been on Tamoxifen for about a month and although I dont think its gotten worse, spring is in the air down here in Texas and I don't want to go through another summer like the last one. What were your s/e's with effexor?

bratscher

Blownaway, I had jitters and insomnia on effexor, as well as the dreaded "sexual side effects ". Those, plus the fact that it is hellacious to quit effexor, made me want to stop taking a drug I didn't seem to need.

I do wish I could go back to progesterone! But I will ask about something for anxiety if progesterone is not possible. I am in the waiting room at the MO...wish me luck.

daisylover

Almost a year on Tamoxifen and its side effects seem to be minimal - some headaches and sporadic daytime hot flashes with regular evening hot flashes... For me, it's quite tolerable. My MO is proposing a switch to an AI due to efficacy for Lobular. I find the knowledge that Tamoxifen was relatively easy encouraging. Hopefully I will fare as well on the AI.

Luckygirl27

hi ladies,

I am about to start tamoxifen and effexor and just wondering how many mg of effexor you were prescribed. The effexor is for anxiety. So worried about both meds but I suppose if it helps keep cancer away,that is a good thing.

Thoughts?

bratscher

Luckygirl27, I was prescribed 37.5mg of effexor. That is the lowest dose there is (in capsules, anyway). My prescription was not for anxiety but for hot flashes, though.

Update on my visit to the MO yesterday: she said No to going back on progesterone, and would not prescribe anything for anxiety, suggested I ask my primary care doc instead.

I dropped the tamoxifen prescription off at the pharmacy yesterday. I guess I'll start taking it today.

Luckygirl27

Well I took my first dose of effexor last night and I don't feel too well. Not sure if it's the effexor or pack of sleep. I am not going to start the tamoxifen until Friday since I want to try it on a weekend. Let us know how the tamoxifen works for you.

tangandchris

Is there a test that shows if you metabolize Tamoxifen? I've seen this mentioned before here, but have never heard MO mention this. Anyone know?

Blownaway

I picked up my script of Effexor 37.5 yesterday and took 1 last night. Did not sleep much but hubby sounded like a chain saw.....  I feel slightly nauseated or queasy off and on but manageable, plus a little jittery.  Same as the last time I tried it and threw the bottle of pills in the trash, but this time I intend to tough it out.  Five to ten years of Tamoxifen is a long time and I'm fed up with the hot flashes since having to stop HRT when diagnosed in March 2014.  BTW - I have not had a single hot flash since before taking it, so I guess it's doing its job. 

MagicalBean

I started Effexor yesterday. I was prescribed 60 mg 2xday for anxiety (to replace sertraline 25mg 1xday). Took one pill in the am-it wasn't long before I got light-headed and dizzy. I ended up taking a 2 hour nap. Didn't take the second one. This morning I took half a pill (30mg) and feel fine. I think I'll stay on the low dose unless I start getting twitchy.

As for the Tamoxifen-I am on week 4 with no SEs to speak of.

katcar0001

I went off BHRT as soon as I was diagnosed. I was on progesterone for 3 years and then a bit of estriol (80%)/estradiol (20%) for the last year to manage premenopausal symptoms. Always had a pretty regular period. Maybe just a couple of irregular ones over the past year. Had a long, heavy period during and after surgery in early Dec and after stopping BHRT. Had lots of night sweats all month, but then I use a heating pad at night for terrible low back pain. Started Tamoxifen early Jan. No period since surgery! 74 days and counting. Praying it won't come back. Minimal night sweats. Will never, ever touch progesterone again. It did wonders for my symptoms, including sleep apnea, but I believe it contributed to my BC. Same for estrogen. There is no difference between synthetic and bioidentical hormones--they are all dangerous. My NP overprescribes them. Did start Lexapro in early Jan but then decided I didn't need it. I am happy that I do not have many symptoms but I wish I knew if Tamoxifen works for me! Don't we all?!

SelenaWolf

@blownaway & magicalbean...

While I don't take Effexor, I do take another SSRI called Cipralex (which doesn't interfere with tamoxifen). When I started to take it, it made me very ill, very quickly, so my doctor advised starting out with a half-dose for a week to allow my brain chemistry to get used to it before moving it up to a full dose. Easing into it was much, much better.

MagicalBean

Thanks, Selena. I'm still on 30 mg daily and have no problems with that strength. Time will tell. I just hate having to take all these extra meds. I know it could be MUCH worse and I should stop whining, but....

fralaliso

Glad I found this thread! Thanks to everyone who has shared their experiences with Tamoxifen SEs. It's comforting to hear so many of you are SE free. I'm awaiting my Oncotype score, but know that Tamoxifen is in my future.

Thanks!

kaza

Hi Ladies, i was taking Arimidex 4.5 years, lots of side effects with this medication, i have been advised to take hormonals for ten years, i have been on Tamoxifen 2 weeks, occasional hot flush, so far so good x

bratscher

It's been just 5 days on Tamoxifen, and the only side effect I notice is trouble getting to sleep/staying asleep. I had a one-day period my first day of Tamoxifen, but since I'm in perimenopause, I'm not really surprised by anything like that anymore :-) I've also been hungrier than usual, but I don't know if that's because of the medication (I hope not!).

I talked to my oncologist about a prescription for anxiety and she said to ask my PCP, who offered... effexor, ugh. After the trouble I had getting off it, I certainly don't want to go back on it again. I learned that some SSRIs really interfere with Tamoxifen. Effexor is one of the few that doesn't. Still, I would prefer not to go on an SSRI or anything long-term. I guess I'll just deal as best I can. It could be so much worse.

MidLifeCrisis

So glad I found this thread … been sifting through this board and becoming more and more discouraged. Even though I *know* discussion boards are apt to have more negative than positive. I was about to start a new thread seeking the positives and came across this one.

3 of my friends who, all in early 40s, have been on Tamoxifen from 1 to 5yrs now and neither have any major issues. The biggest complaint of all three is "hot flashes" but that they were manageable and lessened over time. I started just 2 days ago - so far so good - praying I can handle it as well as they and what sounds like, so many of you, have! I think I also need to stay away from these boards for a bit … that said, keep the positive experiences coming… !!

Blownaway

Midlife - I've been taking Tamoxifen for 3 months and so far I don't notice any side effects or changes in my sleeping or hot flashes that I was having before I started taking it.  Hope you have the same good luck

justmaximom15

I haven't had surgery or radiation yet and I'm honestly trying to only deal with one issue at a time but the Tamoxifen SE have had me worried. I don't even know yet when I'll start taking them or for sure how long but my BS said she figured 10 yrs given my age.

Anyway, my point is that reading all this has given me enough hope to put it aside and go back to dealing with the immediate issue at hand. Surgery on Monday morning!

Thank you all!

MidLifeCrisis

Blownaway ... thanks! Hearing more positive experiences helps keep my "glass 1/2 full"!

Justmaxi ... you sound like I did. From nearly day1 of my dx and before deciding on uni or bi-lateral mastectomy or evenbefore the chemo discussion, I have had severe anxiety over knowing I will be in bed w/tamoxifen or some hormonal therapy for many yrs to come! Now that i'm here and taking it, I am more on edge than ever. Hoping you are spared the SE's, too