Taking Tamoxifen? How is your body reacting to it?

maize

Ladies,

Would like to know how you're doing if you're taking Tamoxifen.  Some women seem to have trouble with the side effects.  Are there ways to alleviate some of the side effects?

Stormynyte

I've been taking it for about 9 months now and other than some mood swings and insomnia for the first month or so and my period lasting 2 days rather than the normal 7 I'm not noticing much for side effects. It also shrank my tumor by more than half in 6 months.

maize

Wow, Stormynyte!  It shrank the tumor by more than half!  I'm glad to read you aren't noticing any particularly bad side effects and that it really does work. 

effcancer

I have been taking it for IDC/mets for 6 weeks now. Had 6 weeks daily rads and began Tamoxifen the last week of rads.

At first the side effects were awful as they were very pronounced. I have also noticed that sometimes when one side effect goes away or lessens, I get a new one. But what I have experienced so far is:

Drenching hot flashes (had them maybe 5-8 times a day, now maybe once)

Muscle aches (still have them, MO not concerned about it)

Constipation (uh, sometimes this gets bad if I eat the wrong thing uless I take EXTRA daily stool softener)

VERY emotional (I could cry on cue if I had to!)

Tired BUT insomniac (this is NUTS-I can be awake sometimes til 3 a.m. and looking for shows on tv)

NO PERIOD or PMS!!!!!!!

Breakouts, mostly in my hairline

Hair falling out (this has slowed down, thank GOD!!!!!!!!)

Swollen ankles

Gas/indigestion (I get painful trapped gas so I can't even fart sometimes and it drives me nuts-Gas-X helps)

That's about it. I know it seems a lot, and when I look at it this way, it IS a lot. But it's a small price to pay to take something that is designed to help me stay alive-at least that's how I look at it.

barsco1963

I have been taking tamo for almost a yr now - SEs have been bearable. Hot flushes (no sweats), joint/muscle aches, nausea and weight loss (not sure these two are from tamo or not). However, I too have had excellent results with tamo/zoladex combo tx. Eight liver lesions down to only 3 now!

Of course everyone is different and will experience different SEs. If you are hesitating, I would suggest that you try it to see how it effects you. I know some women take 1/2 dose in morning and 1/2 at night to help ease the SEs.

Good luck!

fitzdc

SE (hotflashes) only for first few weeks.  However, doctor added lyrica for other issue and the two together produce imsomnia. 

my3sunz42

I've been on Tamox for a little over a week. I was terrified to start it because of the potential SEs. So far I haven't experienced ANYTHING ... yup, you read that right ... NADA, ZIP, ZERO SEs. Remember, everyone is different (ages, weight, activity levels, etc.) ... To me the potential SEs outweigh the risks. Best wishes!

ladyboss1997

I have been on Tamoxifen since 12/13/11. I have had minimal SE's. I started having minor hot flashes - mostly at night. Turning the AC down took care of that. I am more tired at the end of my work week than I remember being - but the last year would have exhausted anyone . . . Other than that - none.

sherry67

Has anyone gotten their periods while on tamoxifen?

Anonymous

I have been on Tamox since Dec. 2010, after an exhaustive trial with all of the AIs (allergic reactions and terrible s.e's).  The biggest s.e. I get is the insomnia that seems to be an uncommon s.e., but my onc has no problem prescribing me Ambien to sleep at night.  If I don't take at least 5 mg, I cannot fall asleep.  Once asleep, I can stay sleeping.  Muscle aches in the early weeks, and they come occasionally still, and I tend to get a lot of charley horses, especially in calves and feet.  Headaches were common early days, but not terrible, and the hot flashes do subside somewhat (though the summer heat helps trigger them - lower the A/C and bring a sweater with you everywhere, just in case you go reverse and get cold!).  Otherwise, I'm doing just fine.  SE's seem to be very mild, and not on-going, except for the insomnia.  Working out helps with the muscle aches/joint aches, and the bloating/constipation (I take a fiber capsule 2x a day as well as a stool softener).  As I can't take any AI's, I'll be on tamox for a long time, my onc has no problem with it, and if it works, we'll stick with it.   Good luck!

effcancer

I was anemic for a couple of months before diagnosis and before taking tamoxifen, and also perimenopausal. So for April and May I had spotty, almost non-existent periods. Then I started Tamoxifen in June and had NO period, and I am supposed to be having one right now in July, but I'm not, and I am not having PMS symptoms. So it is pretty safe to say I am not going to have any.

Stormynyte

Oh yeah, muscle cramps and joint aches, but not often and not very painful,, more annoying than anything. For the first few months I was very emotional, but I'm not sure if that was due to the drug or the stage IV dx. I still have days when my emotions are wonkey, but for the most part it has leveled out.

JamieB86

I have gotten my period every month since starting on May 1.  This month is was a week late, but it did arrive.

midnight1327

I  was almost non existant with my periods before BC, then when i took the tamoxifen it started to come back again, had about 3 months worth and dropped off again, so i guess its between menopause and tamoxifen starting it and stopping it, but i wish it would stay away now, i have had enough of it starting and stoping, so hope its the last of it for me. may was the last one. so hopefully  GONE 4 EVER.

maize

Thanks to all for your responses.  I wonder why Tamoxifen causes insomnia?  The doctor said I have to lose weight in the stomach area so that there will be less estrogen.  The doctor said: "You can't have extra fat in the belly area because estrogen is stored in belly fat."  I have arthritis so I hope Tamoxifen doesn't aggravate the arthritis. I've been trying all sorts of things:  changes in diet, vitamins, etc., hoping these things will help.

agrp1

I've been taking tamoxifen for 4 weeks now. I have had zero side effects so far. (knock on wood!)

maize

Agrp1,

So glad to read that!  

sammistar509

I have been taking Tamoxifen since July 1 and so far no noticable side effects, maybe some mood swings but since my January diagnosis I have random crying episodes.  I am paranoid about gaining weight (I am big already and trying to lose some weight so my tummy tuck fits the rest of me!) so I weigh myself everyday.  My knee has been acting up but I also started running again this week so it's probably that and not the meds.  Hot flashes are hard to determine, it's been hot in upstate NY recently.  

Follow up obgyn appt tomorrow for ovarian cysts........  things are finally mellowing out, I really hope my ovaries are in decent shape!!!   

maize

Sammistar509,

Maybe the crying episodes are enhanced by the Tamoxifen since it decreases the amount of estrogen?  I used to get inexplicably weepy when premenstrual sometimes and wondered what the heck that was about.  I cried off and on after diagnosis.  I think I felt vulnerable, really powerless, at first,  and wasn't sure I could summon up the strength--or even had the ability within me--to deal with it.  I have a very hard time getting weight off--I can walk by a bakery and just smell the odor of pastry and gain weight--but, seriously, I have found that the only way I can lose weight and keep it off is to eat only low-cal foods and to exercise faithfully to burn off calories. 

I did read that Tamoxifen can cause joint pain:

http://www.medhelp.org/posts/Breast-Cancer/Could-Tamoxifen-be-the-cause/show/259675

Hopefully, your knee pain isn't caused by the Tamoxifen, and hopefully, your ovaries are in good shape.  I read in a book by a specialist that sometimes other health issues "come out of the woodwork" after a bc diagnosis, most of them minor health issues.

effcancer

At my last MO visit (I have one tomorrow), I did specificaly mention to my MO that I was having pain in ribs, hips and wherever else it showed up. She was not concerned, she said it was from the Tamoxifen, as she had just read my labs and everything except my rbc was a lot better (truth be told, I do feel a LOT better even since my last MO visit). Also, the other SE's I get from tamoxifen are SO dramatic. Yesterday I had the worst hot flash I have ever experienced in my life! Usually I just get warm then sweat then I'm done. Jeez, this was face, chest and ears turned red, really felt like someone was aiming a hot hair dryer at the whole area, and my skin was HOT HOT HOT to the touch. After about 20 minutes (but what seemed like an eternity) it went away completely, I was back to normal, but exhausted. It freaked me out just because of the intensity of it. Had one similar today but less intense. If I had never had a hot flash before or educated myself on how nasty they CAN get, I would have been at the ER!

I am suspecting that my RBC will be higher tomorrow since I have a lot more stamina these days along with color. Still wrestling with the insomnia, but I take eough meds as it is, not interested in addiing sleeping stuff to the mix. 

maize

Hi effcancer,

It seems like a lot of people say they get joint pain and hot flashes.  It lasted 20 minutes?  Geez!

effcancer

Some hot flashes can last up to 30! Thank GOD I don't get them like that all the time. Some just come and go and I realize, in an afterthought, that I just had a hot flash. This one got my attention.

wildrumara

I've been on Tamoxifen since 03-26-12.  At first, I was having quite a bit of nightsweats, and maybe an occasional hot flash.  Hot flashes are non-existent now.  I do notice my knees hurt, which I never had before, but that is about it for joint pain.  I am definitely more fatigued and if anything, I'm sleeping better because of this fatigue.  I have gained 5 lbs.  I am watching what I eat and still walking 3-4 miles 5 x per week, but the scale isn't budging......its pissing me off.  I know, I know, its just 5 lbs. but I worry that 5 lbs. will soon lead to 10 lbs. and so on......I don't want to deprive myself cause I've never really had to, but it looks like I'm really going to have to watch from now on, which isn't a bad thing, I suppose, considering my cancer diagnosis!

Emaline

I've been on since March 2012 and my hotflashes are getting worse   If I don't eat something small every two hours, I get nauseated. 

GaLynne

I've been on Tamoxifen over 4 years, and will finish up this November. The only side effect I've had was hot flashes and night sweats (I was already menopausal). At my doctor's recommendation, I started taking 37.5 mg of Effexor XR (extended release), which helped immensely.

effcancer

WEIRD!!!!!!!

M'kay, I had a period. After having nothing but very light spotting in April and May due to anemia, then NO period in June or July, after starting tamoxifen, I had a full-blown, normal period last week. WEIRD! Only difference between it and previous periods, no symptoms this time and almost no clotting.

Eff

SonyaS

I have been on tamoxifen for 1.5 years.   The first year was pretty easy with minimal hot flashes and not much else.  Lately, I'm getting some more side effects.... bloating and the constant need to pee.  Was worked up for uti multiple times and eventually had my first TV ultrasound, which showed some ovarian cysts and a thickening of the uterine lining.  My onc is not worried.  Also, my blood work show high blood levels of estrogen.  I don't see much written on bladder symptoms... wondering if anyone else has dealt with this.  Personally, I want to stop taking the tamoxifen, but I keep reading research that suggests that my chances of reoccurance go down the closer I get to the full 5 years of tamoxifen.

Anonymous

I took tamox for the full 5 years and tolerated it very well with minimal SEs. (now have been taking evista for 3 years) : Insomnia---I take 3 mg melatonin about an hour before bedtime. Aches---I take ibuprophen or aleve as needed. Hot flashes----use fans, ac, dress in layers whenever possible, tried to exercise more, use coldpacks on the back of the neck. It takes your body a few months to adjust to the medication, so hang in there!

Anne 

Stormynyte

The constant need to pee? Is that a SE? I've been having that issue for a few months and had no idea why.