Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Nov 26, 2007 03:02PM - edited Nov 15, 2017 01:59PM by Moderators
Dear All, (and Layne are you there?)
Got my Tamox today and will start in a week. Where are my tamoxi pals? It says weight loss for one of the side effects. Now that's a good thing. Basha
Edited by Mods to add content from the main Breastcancer.org site's section on Tamoxifen in Pill Form (Brand Name: Nolvadex): Benefits, Side Effects and More
Posts 30091 - 30120 (30,458 total)
Sep 25, 2019 08:43AM TrmTab wrote:
lala...that is interesting re the long slow release of the T from our systems. Especially so as my MO was most concerned with the DVT SE...I travel a lot for business and have many long distance flights each year (coast to coast/Europe)...so now I am wearing compression stockings on flights but he said I would not have to wear compression stockings within 6 weeks of being off T! Guess I'll need to rethink that, having a stroke due to a SE is more scary to me than have a recurrance. TT
Sep 25, 2019 02:30PM peridot180 wrote:
I finally started the Tamoxifen a couple days ago. I was really scared to do it, but I did it. When did everyone's side effects get the worst? I'm already having some nausea and cramping (although the cramping might be since my period is coming up). Does it take a while for some side effects to show up?
Also, what time of day do you take it? I'm taking it at night so the nausea doesn't bother me as much.
I'll be seeing my MO today and see what she says, too.
I hope everyone is doing well. : )
Sep 25, 2019 02:56PM edj3 wrote:
Today was day 3 of tamoxifen for me. I'm taking 5 mg a day in the morning, after I've worked out. I definitely feel nauseous but it's hard to say whether that's from tamoxifen or from fillers used to bind the pill. I'm a dainty snowflake like that.
I do have some joint/muscle pain that started the week after I got my first Prolia injection (which was 10 days before I started tamoxifen). Fun times.
Sep 25, 2019 03:15PM Andraxo wrote:
Peridot180 - some side effects will show in days, others weeks, others months. The same is true for how long it takes for them to resolve when stopping taking it. A good example is joint pain. For many, it doesn't happen until months into it (years in my case), when the serum levels are high and keep getting higher due to the very long half life.
By 2.5 years the side effects reached the point where I had to take a break to prove to MO that is wasn't early menopause. Biggest complaints: night joint pain, and muscle fatigue/difficulty to recover from sports. After taking a blissful 3 month break (all sx resolved within 2-6 weeks - yy!! - except joint pain took 3 months) I started back on it at 1/4 dose (5mg). The joint pain (knees) started back in approx 1 month ago (5 months into taking it again). It wakes me up at 3-4am...right when T is peak in my system after taking it. It's not arthritis, but feels like it. I'm an athlete (recreational, competitive...running, mountain biking, snowboarding) and my joints have been well checked by ortho.
I also take it at night - at the same time with the rest of my supplements/vitamins.
Hope you do well on it! most people do :)
Sep 25, 2019 10:18PM Mymomsgirl wrote:
Peridot I have cramping around my period and around the time I would be ovulating, I also find that I'm exhausted about 24-48 hours before cycle starts. For me warm flashes kicked in about a week after starting. I take 10 in the morning and 10 at night, when I did 20 at once the hot flashes were worse. Good luck!
Sep 25, 2019 10:20PM Arwa89 wrote:
hi every one i have a sensitive question i am 30 years old my mo suggest 5 years of tamoxifen but i was reading about its SE and got scared cuz it cause vaginal atorphy, dryness, decrease sexual desire and painful sex this part is important to me and my husband so can share your personal experience and if any thing helps to reduce the S
Sep 26, 2019 01:30PM peridot180 wrote:
Thanks guys for the info on side effects. So far just slight nausea. Not looking forward to any other side effects, but I will keep at it and see how I do. My MO really wants me to keep it up. Thanks for the advice!
Sep 27, 2019 01:53PM rljes wrote:
lala1 - hi, I am interested in what you find re: Relizen. I've posted before about my severe Hot Flashes, and to this day have not found any relief. I have Severe Hot Flashes to the point of panic attacks. (I have not started Tamoxifen because I am afraid it will make the Hot Flashes worse- if that's even possible)
I've tried Effexor, Paxil, Oxybutynin, Gabapentin, and my OBGYN suggested BELLADONNA, but won't write a script because it contains an opiod. She said for me to get it over the internet - I don't think so. Black Cohosh was suggested but someone in the Triple Positive group said it shouldn't be taken. Interfers with something. (too much information for me to sort out)
I have been approved thru insurance for SBG injection (Stellate Ganglion Block) but cannot find anyone to drive me to the hospital- which is pretty far away- not many Dr's know how to do this procedure) Its used to reduce hot flashes and recently in the news to help PTSD.
Any help or suggestions would be appreciated! Thx!
Sep 27, 2019 06:32PM runor wrote:
BELLADONNA, deadly nightshade, is a common homeopathic remedy. It is available in most pharmacies here in Canada, no prescription required.
Belladonna prepared homeopathically has NO DETECTABLE belladonna in it. This is the whole gobbledygook of homeopathics, the remedies that are made from X substance could never be traced back to X substance because it is so diluted that there is no detectable amount of the original X in the remedy. And the more diluted it is, the more powerful it is considered to be according to homeopathic practice. You could swallow an entire bottle of homeopathic BELLADONNA and no harm would come to you. But I would be very cautious indeed to take belladonna in any form other than homeopathically.
I have studied homeopathy. I use it on myself, my family and my animals.
Sep 27, 2019 07:29PM flashlight wrote:
Rljes, I don't understand why your doctor would want you to take an old drug like Belladona. I see that you were on oxybutynin. Did she order it because of urinary frequency or spasms? When I was going through menopause my hot flashes were very severe with night sweats. That's why I was put on a low dose of estrogen/progesterone and maybe why I got breast cancer. You don't want to take black cohosh because of its estrogen effect. I've read in one of the post that the clonidine patch might help. You do need to monitor your blood pressure/heart rate, change the patch weekly, and change sites. The SBG injection seems extreme and probably has its own list of side effects. Have you considered Lexapro? It is used for anxiety with panic attacks. With many of these drugs and supplements it takes a month or so to work. I hope you can find relief soon. Maybe, take that drive and find a second opinion. Good luck to you.
Sep 28, 2019 05:31PM Rae7200 wrote:
Ginger supplements 500 mg stopped most of the night sweats for me. I found that tip here on bc.org, after going through years and years of posts. When I first got BC in 2014, I could not take tamox because the night sweats were so bad and so frequent that I couldn’t get into REM sleep. You gotta have sleep! I’d alsotried black cohosh (no joy), and every combination of when to take the tamox. Can’t take AI’s because of heart. Since my onctotype was 13, I decided to take a deep breath and take my chances.
Three years and one week later, it came back; the cancer had completely displaced normal tissue in a lymph node in my left axilla. Fortunately, it was in an area that had not been irradiated (as best as my radiologist at Hopkins could tell — my case went to the tumor board.). So we did another lumpectomy, and 6 weeks of radiayion, rather than 19 days. And now I’m on 5 mg of tamoxifen. I still get occasional night sweats, but I’m determined to stay on the tamoxifen. We ran the Breast Cancer Index, and it looks like I’ll only need 5 years, not 10, which is a huge relief. I still have other side effects, but the 5 mg dosage makes them tolerable (I hope) for another 4 years or so.
Sep 30, 2019 08:34AM edj3 wrote:
Well this is discouraging. I've been on 5 mg for a week and I have hot flashes which I really didn't get during menopause. Also my run this morning was awful, just weird muscle cramps. Given that last week was a lighter running week, and yesterday was a rest day, this is depressing.
Sep 30, 2019 12:47PM - edited Sep 30, 2019 12:50PM by rljes
Hey everyone, thanks for the replies.
Flashlight - my MO ran out of ideas for hot flashes so sent me to OBGYN. out of desperation she suggested Belladonna. The oxybutynin was prescribed for the hot flashes, I can't take any antidepressants, its like taking a bottle of Nyquil. (Lexapro, Paxil, Effexor) I was the one that came up with SGB injection - I saw it on 60 Minutes. I too was on Estrace Pills after my hysterectomy in 1994, and believe it contributed to my cancer.
This week will be 90 degrees - then Friday cool front hits. I had promised myself when it got below 50 at night I would start Tamoxifen 5mg regardless of my hot flashes. So FRIDAY it is.
I will try the Ginger. Anybody know how much to take for the Hot Flashes? Thx!
Oct 1, 2019 12:08AM runor wrote:
Edj, back when I started taking tamox I remember it felt like my legs had turned to wood. I had always been rather flexible and all off a sudden I was gimping around as if I had no joints and was made of stone. It was awful. I wasn't running, but any outside yard work was miserable. I am positive it was tamoxifen related, but after a while that went away and was replaced by a host of new and equally annoying issues.
I find odd side effects seem to pop up and then as mysteriously, fade away. It's kind of cyclical. I also get hot flashes, worst at night. Covers off, covers on, covers off, covers on, covers off, swear and whack the pillow, try to sleep, now I'm cold, covers on, FLASH, covers off, kick my husband because I am positive it is him who is raising the temp under the covers. I consider asking him to go sleep on the couch since he is obviously the problem. Wake up too early, tired and look at my beloved cup of coffee as if it might be the culprit. No. It's that tamox. And my hot husband. Wait. That came out wrong. Not hot in that way, not in a Magnum PI kind of way... now I'm sad.
Where was I going with this? ..oh yeah, side effects. My latest one is peeing. I do it constantly. Once two tablespoons of pee have accumulated in my bladder, my bladder does not send me the signal that it's full, it sends me a signal that it's full and going to empty right this second whether that is convenient or not. All of a sudden peeing is an emergency! I used to go 10 hours without having to stop to pee. Now the SECOND I get the heads up that I have to pee, I AM peeing. Imagine my surprise. I am certain that is tamox working its magic on my girl bits. And on that topic the last time I had sex with my husband (just in case you thought I might be getting it on with Magnum PI) I bled! There are bits and pieces that tear now instead of whatever else they used to do. Joy.
Edj, I think you will find that one issue will rise to the top, annoy you for a while, then in a few weeks to months it will resolve and something else will come along. It's like you've joined the Side Effect of The Month Club, and you never know what goody will arrive at your door the first of each month. But the flashes, those have not faded away. Blah.
Oct 1, 2019 01:22AM sm627 wrote:
I want to give big hugs to you all. This summer side effects were very yucky for me really bad cramping and pelvic pain. I went to see my MO today and I though I was in a dream when she told me that I could take 5mg of Tamoxifen instead of 20. I asked her if I could just take 10mg, but when she said 5 I had to ask her again to make sure I was hearing her right.
I hope 5mg is the magic number and make Tamoxifen easier to live with. Is anyone else out there taking 5mg how is it going for you?
Wishing everyone well sending you all lots of hugs and Love!
Oct 1, 2019 04:44AM edj3 wrote:
runor -- yay? Boy that's not the Club of the Month I wanted to join! I'm dreading this morning's run, it's hot again (seriously, it's Oct. 1 and it's 75 out there at nearly 4 AM) and I'm so weirdly achy.
sm627, that's what I've started on. My MO agreed I could do the super slow ramp I wanted to do; I've been on this a week and a day. Sigh.
Oct 1, 2019 05:38AM Rah2464 wrote:
Runor thanks once again for starting my day with a huge laugh. Yeah the side effect of the month club
sm627 very happy that your MO was willing to try a lower dose for you yay! I hope somewhere there is data being collected on how folks do on the lower doses so those that come after us won't have the one size fits all dosing,
Oct 1, 2019 08:37AM TrmTab wrote:
I take 10 MWF and 5 the other days...that gives me 50mg across the seven days of the week...I wanted 5, my MO wanted 10, this is the compromise. SEs are minimal compared to the bad SEs I had on Arimidex...
Runor I do use coconut oil vs bleed...my GYN suggested it. Trader Joe's has little plastic packets of coconut oil that are easy to store bedside...TT
Oct 1, 2019 01:35PM Andraxo wrote:
sm627 - after a 3 month break after 2.5 years on 20mg (with the last 6 months of that being awful), I am on 5mg since April 1st. MO prescribed 10mg but I decided on 5mg because it's my life and my choice. I had been doing very well on 5mg - felt like ME again, excellent sports performance all summer. Yay! :) In August I though maybe I should try take a little more, so I added 2 days/week at 10mg and did that for 4 weeks. Mistake. All my old symptoms came back by the 4th week. I've been back to just the 5mg daily for the past month but the symptoms aren't going back down and even seem to be getting worse. Knee joint pain, muscles that don't perform or recover well from big exercise, hard to get up from a squatting position, general crankiness and word finding problems. I thinking about taking a break again to clear my system, and then start back at 5mg. Maybe around 5-6 months the 5mg would have caused the same problems without the 10mg 2 day/wk boost. I need to find that out. With upcoming surgery (to likely take down my reconstruction and be flat) I may get a break from T anyway. I thought I read that others were told to stop taking it for a couple weeks around surgery. I'll find out next week when I see both surgeon and MO.
Great if you can take 5mg! You might notice a bigger change if you take a few week break from it first and then re-start. It has such a long half life that it may take a very long time to see a difference just dropping from 20mg to 5mg, but everyone is different. Hope it goes well and you feel better on lower dose!!
Oct 1, 2019 02:09PM BlueGirlRedState wrote:
Runor - constant peeing. I am finally am seeing a pelvic floor therapist and am hoping that will help with the urgency/gotta go right now/leaks etc. I started experiencing some of this before Tamoxifen, with menopause, but not nearly to the degree I do now. I told her that one of these days I was going to get arrested for squatting behind a bush in a park. After showing me a plastic model of the female insides, she gave me a series of easy exercises to do to help strengthen muscles, that only take a couple of minutes/2x a day. I have seen her once so far and will see her again this week. I think on that visit I will insert a camera to watch what those muscles are doing/check to see if I am doing them correctly. Oddly, drinking lots of water during the day seems to help. I usually get about 6 8oz glasses, plus 2 mugs of coffee, and now that it is getting colder, sometimes tea in evening. I sometimes wonder if fresh coffee vs instant is a problem. When camping I take an instant expresso, and the urgency does not seem as bad. Then again, when camping it is usually remote or lots of bushes, so squatting when needed isn't too much if an issue.
Oct 1, 2019 02:46PM Xxxxxxxxxxxxxxx wrote:
I have also joined the 5 mg club. My MO doesn't know, she just wouldn't approve. I must say that I have hot flashes at night, but they are not so bad, and I'm almost glad to have them because I guess that's proof that 5 mg is working.
I had started with 20 mg, I took them 3 days... From the first pill I felt my ankles stiff and sore, and my belly was that of a 7 month pregnant. I think that if I continue with the standard dose my endometrium would thicken in a few months, and I don't want to change to an AI, so I made my decision
Oct 1, 2019 04:37PM flashlight wrote:
Sara, wonderful news!!!
Oct 2, 2019 12:17AM - edited Oct 2, 2019 12:20AM by runor
My gut feels bloated too, some of that could be typical middle age weight gain, where the middle part of me is really aging! But right from the start of tamoxifen my bowels really got slow. Initially the constipation was really bad, but my gut is still sluggish. From a lifetime of no poop problems to this? I recognize now that my bloated feeling is a sluggish bowel symptom. If I eat a diet that gets things moving (hello stewed prunes!) then that gross heavy gut feeling goes away.
Edited to add: BlueGirlRed, did I understand that you were going to put a camera up your hoohoo and film what's going on up there? Oh my god! I can imagine that if I ever did that, once the camera had pushed its way past the cobwebs and dust bunnies, I'd find all the socks that have gone missing over the years. And they think dryers send them to another dimension. Wrong! They end up in your vagina, collecting dust and being viewed on camera. Cool.
Oct 2, 2019 08:43AM TrmTab wrote:
Runor - that is truly LOL funny!
I have gained a solid 5 lbs in my belly since starting the big T. I do eat dried plums (prunes) for bone building and digestive qualities...they are more like large raisins then the stewed prunes...uck.
Oct 2, 2019 09:12PM runor wrote:
TrmTab, I have a bad track record with stewed prunes, which I rarely eat. But when I do I know I should only eat a few. Just these 5 prunes. 6. Well, what's 4 more, let's make it an even 10. What harm can come from 10 stewed prunes? But there's only a few left to put in the fridge. Seems kind of pointless to put so few stewed prunes in the fridge, they'll just go bad. May as well eat them. So in this way I have been known to consume VAST quantities of stewed prunes and I feel absolutely fine, for a few hours. Then an environmental catastrophe of epic proportions takes place and I REGRET with weepy tearfulness that I ate all those damn prunes as all hell breaks loose! I swear every time that I will NEVER do that again. Yeah, right. I just let enough time go in between that I forget the serious nature of the intestinal backlash that unleashes itself upon me when I eat a pound of stewed prunes. But I do love them!
Oct 2, 2019 10:17PM Mymomsgirl wrote:
Runor I get the belly thing, no bowel issues yet but just that uncomfortable feeling. I had a appointment with my Ob/gyn and she said most people don't tell you that your GI tract needs some estrogen too, so when you take tamoxifen it can really mess with that too.
Oct 3, 2019 04:51AM edj3 wrote:
Oh runor I did that with dates. We'd been given some exquisite Turkish dates for Christmas one year, a fairly large box. They were sweet and rich and normally I'd eat one. That day I had five. That night was beyond miserable and for HOURS! How could such yumminess cause so much discomfort?
Oct 4, 2019 03:10AM runor wrote:
Edj, I didn't know dates could get the old innards working!
Aside from prunes I once binged on dried apples. Oh they were so good and chewy and I ate a frightful amount. Let's just say that it was one of those movie moments when your gut goes 'gurgle' and you know, KNOW, there is no good outcome. I have never driven home so fast in my life, tears streaming down my face as I clenched with all my might to make it to the bathroom. Which I did, and where I stayed for the next 5 hours saying I will never eat a pound of dried apples again. To this day I fear a dried apple!
Oct 4, 2019 03:59AM - edited Oct 4, 2019 04:02AM by WorryThePooh
Hi everyone, just found this topic so jumping in, as I recently started taking Tamoxifen 20mg on the 6th of September. Prior to that I was on Anastrazole for 5 months and 5 days.
Switched from Anastrazole to Tamoxifen because Anastrazole was giving me terrible joint aches and pains.
So far Tamoxifen is a lot easier on my joints. However the hot flushes and mood swings have not been pleasant, as well as a sort of flat feeling mentally. Also I am worried as it seems to have had an effect on my desire to be creative, something which is important to me. Apparently losing Oestrogen from the brain reduces our creative abilities! Has anyone else encountered this problem?
Mymomsgirl - that is interesting re the GI tract effects. I have had a vaguely upset stomach over the last few weeks, and never guessed it could be the Tamoxifen causing it!
Arwa89 - it's natural for you to worry about that at your age especially, but reading lists of symptoms could make you more worried than is necessary. I've only been on it one month but haven't noticed any issue in that regard. :)