New to tamoxifen

Jrachelle

I am high risk based on family history and ALH. Gail score 41%.It took me a really long time to start tamoxifen. I was terrified, read way too much. Had to start effexor a month before and now it's been 2 weeks on tamoxifen. I feel no side effects. Now I'm worried I am one of the non metabolizers! I am making myself nuts. I know effexor helps with side effects, so maybe that's it. The only thing I really notice is that I'm chilled and shivery a lot. Do side effects take a long time to start? Maybe I am lucky!

Lolis197138

Hi,

My side effects were muscle pains. And hot flashes and night sweats. I had hot flashes during my last two chemo sessions so I don't know when they started because of tamoxifen. The muscle pain started about a week or so after starting tamoxifen. 

Keep in mind that not everyone has side effects. 

farmerlucy

Good for you for being proactive. The main SE of Tamoxifen is hot flashes and Effexor does a great job of lessening those. I don't think the presence of SE or not means anything re: effectiveness. I have taken a thyroid pill everyday for about ten years, now when I take my tamoxifen I put it in the same category and move along with my day. Best of luck!

Lotusconnie

Jrachelle, do you mind if I ask you about your age? I am 36 and I have widespread ADH. My MO wants me to wait till I am 40 or 45 to start tamoxifen. And have screening imaging tests.

MarieBernice6234

Hi Everyone -

I am new to Tamoxifen, started it on 1/22/15. By that time, I had already been on the Effexor for a while, after tapering off the Zoloft. I understand that the Effexor is supposed to help lessen the "hot flashes" if that is the case - do you not have them, or are they more like "warm flashes"?

MarieBernice6234

AlwaysSunny79

Hi, I'm 35 and I just started Tamoxifen today for prevention. I had a full hysterectomy in 2010 after genetic tests showed I am BRCA1+. I have had hot flashes and night sweats and mood swings since shortly after my hysterectomy and they are at times horrific. I started Effexor 2 months ago and haven't noticed the hot flashes, night sweats or mood swings as much. It's too early for me to say anything about SE's but I will be following this thread to add my input at a later date. Thank you for starting this thread as I had questions about this!

fluffycats

The chilled shivery feeling is one of the side effects i have had since the beginning with tamox. Warm flushes are occurring more often now that I passed the 3 month mark. I wake up every morning with damp hair--that started after a couple weeks on tamox.

AlwaysSunny79

Hi, I am at 4 days on tamox and started to feel nauseous after the 2nd day. I take it in the morning and as long as I have crackers or something light with it then I don't have the nausea. So far, I am doing well with it and don't feel anymore tired than I normally do. I have become more active but I think that's more due to my recent scare. I also take effexor and have read on here that it may help with the extra hot flashes as a SE. I already get hot flashes from menopause but the effexor has been staving those off considerably. So far, so good

AlwaysSunny79

I have now been on Tamoxifen for 3 weeks and I no longer get nauseous but I have noticed some joint pain and bruising. The joint pain isn't bad enough for me to take anything stronger than 2 advil and that's maybe only twice a week. The bruising just started this week and looks like round bluish purple quarter sized bruises but I haven't been injured in any way that I know of. I am still doing well IMO and will continue taking it and the low dose aspirin.

fizzdon52

I've been on Tamoxifen for about 2 weeks now. Feel a bit funny in the head sometimes and nearly fainted at work the other day but I can live with that. However I have been having really strange feelings like I'm getting a really bad period. Haven't had one of those for over a year now as was on Femara and Zoladex injections. I'm 54 and if I start getting my periods again I will really lose the plot. Does anyone know if Tamoxifen can bring about periods again after a long absence. I am also having hot flushes which is weird as I'm not in menopause?

njdolfan

Hi I am a newbie to Tamoxifen, today is my first dose. I have a really big question for any who may know\: I have AVASCULAR NECROSIS or sometimes known as OSTEO NECROSIS and wonder if Tamoxifen could speed up the death of my joint bones? Also, is there a good time to take this med?

Thanks for any and all to respond.

GOD BLESS ALL.

Moderators

Hello njdolfan, and welcome to Breastcancer.org.

Did you discuss this with your medical oncologist? Or perhaps with your doctor who manages your avascular necrosis? It is a good question.

Taken from this page: http://www.breastcancer.org/treatment/hormonal/ser.. (but not necessary relating to necrosis).

Tamoxifen offers other health benefits that aren't related to treating cancer. Because it's a SERM, it selectively either blocks or activates estrogen's action on specific cells. While tamoxifen blocks estrogen's action on breast cells, it activates estrogen's action in bone and liver cells. So tamoxifen can:

• help stop bone loss after menopause
• lower cholesterol levels

AlwaysSunny79

I took tamoxifen from April 2015 to August 2015. I didn't have any issues other than bruising and joint pain. I had a stroke August 28th 2015 and just 2 weeks ago found out that the tamoxifen was the cause. I'm not doing anything about it. Just happy I know the cause now.

Egads007

I’ve been on it for 4 years. I started feeling as if my feet were beaten with a baseball bat upon waking just 5 days after taking the first pill. Horrific leg spasms bad enough to wake me up in the middle of the night. I literally stumbled out of bed. Hot flashes 2 weeks in...anytime, anywhere, all day long, soaking wet. Uterine polys about a month in which led to a d&c at the 9 month point. Fast forward to the 1 year point and I joined a gym...started with a trainer and never looked back. I lift weights and combine it with cardio, haven’t felt this good in 20 years! Strangely enough over a short period of training time ALL the foot aches and leg pain are GONE. No gyno problems ever returned. Hot flashes are down to twice a day...right after showering or applying makeup (of course couldn’t be at a convenient time lol). I’m convinced that exercise is the key to minimizing Tamoxifen side effects. If I take a break from the gym for more than 2 weeks most of the side effects come creeping back I can’t recommend starting any type of exercise program enough...definitely worth a try!

Paco

Egads,

This is such good news about the exercise! I spoke with a (younger) coworker yesterday who was warning me against tamoxifen, saying it made her feel 100'years old. I don't believe she gets much exercise so I might suggest we do something together. I exercise regularly. Hopefully I can sidestep the SEs as a result.

Egads007

Hi Paco,

A workout buddy is a great idea! It’ll help keep her in track....within a few weeks she just may be feeling better...and only 75 years old lol!

While you may not side step all the SEs I think it’s worth a shot....keep us posted on your progress please! Cheers and all the best for an easy time with good ol’ tamoxifen!

AlwaysSunny79

That makes a lot of sense to me about exercise. I wasn't really exercising, but I was walking a lot and it felt good to get outta my head and walk away the negative SE's.