Tamoxifen

Faith1122

What is everybody's experience with it & has anyone decided not to take it ?

Penny67

No terrible problems...
I have been taking Tamoxifen for 2 months and the only side effect I have continued to have is hot flashes which I already had from the chemo. Since my cancer was extremely hormonally driven, there is no way I would stop taking it unless my doctor took me off it. As far as the weight gain some people talk of from tamoxifen, I'm not sure as I gained weight during chemo from the steroids and the fact that it messed with my hormones and metabolism. I think that maybe the tamox makes it more difficult to lose weight, but I'm hoping if I work at it long and hard it will eventually come off.

disneyfan2008

Sept will be 4 yrs on
Sept will be 4 yrs on tamoxifen...for the first 2 1/2 yrs no side effects at all (up many times each night but not sure if just my age..52)

@ 6 mths I would have internal ultrasound to check for thickening of uterus (common side effect) after about 4 of them followed each time with D & C I started to bleed and it was years post meno( maybe 3-4)

shortly after I had total hysterectomy (one year next week) all good now..so I have one more year one I hit sept..

Denise

crselby

Tamoifen
It has been nearly 3 years since my diagnosis. I stopped taking it after less than 2 years because it was giving me endometrial polyps, as evidenced by uterine ultrasounds. (Had polyps removed twice.) Oncologist agreed, since he doesn't see my DCIS as having a huge chance of recurring anyway. I refused aromatase inhibitors due to THEIR probable side effects.

Our situations are all different. My cancer was strongly estrogen positive and I had reconciled myself to the fact that reducing the estrogen was important enough to preventing a recurrence that I would deal with the side effects of taking Tamoxifen such as extreme (in my case) hot flashes. But risking uterine cancer for Tamoxifen's benefits didn't make sense when having frequent mammograms would probably catch any recurrence early.

Hope this helps.

~~Connie~~

TraciInLA

crselby said:

Tamoifen
It has been nearly 3 years since my diagnosis. I stopped taking it after less than 2 years because it was giving me endometrial polyps, as evidenced by uterine ultrasounds. (Had polyps removed twice.) Oncologist agreed, since he doesn't see my DCIS as having a huge chance of recurring anyway. I refused aromatase inhibitors due to THEIR probable side effects.

Our situations are all different. My cancer was strongly estrogen positive and I had reconciled myself to the fact that reducing the estrogen was important enough to preventing a recurrence that I would deal with the side effects of taking Tamoxifen such as extreme (in my case) hot flashes. But risking uterine cancer for Tamoxifen's benefits didn't make sense when having frequent mammograms would probably catch any recurrence early.

Hope this helps.

~~Connie~~

2 1/2 years, still very manageable
I've been on Tamoxifen for 2 years, 6 months and counting, and the side effects for me have been manageable.

Hot flashes are the worst of them, but taking Vitamin E (with my doctors' blessings) helps for me. I've also found it just about impossible to lose weight, but don't seem to be gaining, as long as I keep up my exercise routine.

I'm 43, and nowhere near menopause -- my periods have always been regular like the sun, and Tamoxifen hasn't changed them one bit. I see my OB/GYN every year to make sure there haven't been any gynecological changes, but so far, everything down there is business as usual. :-)

For myself, I feel strongly that I MUST do everything I can to keep cancer from taking over my life again -- I would never have considered NOT taking it, and I'm going to keep taking it for as long as my doctors feel I should.

Traci

Faith1122

disneyfan2008 said:

Sept will be 4 yrs on
Sept will be 4 yrs on tamoxifen...for the first 2 1/2 yrs no side effects at all (up many times each night but not sure if just my age..52)

@ 6 mths I would have internal ultrasound to check for thickening of uterus (common side effect) after about 4 of them followed each time with D & C I started to bleed and it was years post meno( maybe 3-4)

shortly after I had total hysterectomy (one year next week) all good now..so I have one more year one I hit sept..

Denise

I have already had a
I have already had a hysterectomy, ovaries still in tact, 1 year ago so I guess that is 1 less thing to worry about. Thanks for your response!

Faith1122

crselby said:

Tamoifen
It has been nearly 3 years since my diagnosis. I stopped taking it after less than 2 years because it was giving me endometrial polyps, as evidenced by uterine ultrasounds. (Had polyps removed twice.) Oncologist agreed, since he doesn't see my DCIS as having a huge chance of recurring anyway. I refused aromatase inhibitors due to THEIR probable side effects.

Our situations are all different. My cancer was strongly estrogen positive and I had reconciled myself to the fact that reducing the estrogen was important enough to preventing a recurrence that I would deal with the side effects of taking Tamoxifen such as extreme (in my case) hot flashes. But risking uterine cancer for Tamoxifen's benefits didn't make sense when having frequent mammograms would probably catch any recurrence early.

Hope this helps.

~~Connie~~

I had a hysterectomy,
I had a hysterectomy, ovaries in tact, a year ago. I am not looking forward to anymore moodiness or weight gain. Thanks for your response!

debi.18

Faith1122 said:

I had a hysterectomy,
I had a hysterectomy, ovaries in tact, a year ago. I am not looking forward to anymore moodiness or weight gain. Thanks for your response!

Since January
I've been on it since January. Only problem is the hot flashes. My onc prescribed effexor and it really tamed them down. I also gained about 15 lbs during chemo. Haven't been able to loose it, but haven't gained any more yet. I just started going back to the gym, so keeping my fingers crossed it will start to come off.

Hugs, Debi

TraciInLA

debi.18 said:

Since January
I've been on it since January. Only problem is the hot flashes. My onc prescribed effexor and it really tamed them down. I also gained about 15 lbs during chemo. Haven't been able to loose it, but haven't gained any more yet. I just started going back to the gym, so keeping my fingers crossed it will start to come off.

Hugs, Debi

Bumping up
Doing my best to bump up all of yesterday's posts, past those of last night's spammers, so they don't get lost.

Faith1122

debi.18 said:

Since January
I've been on it since January. Only problem is the hot flashes. My onc prescribed effexor and it really tamed them down. I also gained about 15 lbs during chemo. Haven't been able to loose it, but haven't gained any more yet. I just started going back to the gym, so keeping my fingers crossed it will start to come off.

Hugs, Debi

Thank you all! I am having
Thank you all! I am having anxiety just thinking about it. Well I am having anxiety about everything since having cancer. I am going away with my husband in June to Turcs & Caicos. My first trip without my kids & I don't think I want to start it until after the trip. I just want to relax & enjoy myself before any of that begins. The past 5 years have been rough, I got diagnosed with Hashimoto's thyroiditis, adenomyosis - took lupron injections for 6 months 7 then still had to get a hysterectomy. Now BC & had to reschedule my mastectomy because I got pneumonia. 5 surgeries in 1 year. I need a break.

Frankie Shannon

I have been on Tamoxifen
I have been on Tamoxifen almost 2yrs in July no hysterectomy so far the only problem is hot flash's.
Hugs Frankie

Frankie Shannon

Faith1122 said:

Thank you all! I am having
Thank you all! I am having anxiety just thinking about it. Well I am having anxiety about everything since having cancer. I am going away with my husband in June to Turcs & Caicos. My first trip without my kids & I don't think I want to start it until after the trip. I just want to relax & enjoy myself before any of that begins. The past 5 years have been rough, I got diagnosed with Hashimoto's thyroiditis, adenomyosis - took lupron injections for 6 months 7 then still had to get a hysterectomy. Now BC & had to reschedule my mastectomy because I got pneumonia. 5 surgeries in 1 year. I need a break.

We all get anxiety with
We all get anxiety with every thing that go's on with our body's.Have a great time on vacation with just hubby and try not to think off any thing.
Hugs Frankie

buggywidow1960

Tomoxifen
I have been on it for 5 months. I have leg cramps, hot flashes that last more than a minutes, bruising, and hypoglycemia. I had none of these symptoms before tomoxifen. So I do not know if they are all related, but it gets aggravating dealing with them. Vit E seems to help with hot flashes, with my drs approval. I will not go off the drug yet, because I have my family. No chemo either, just radiation.

buggywidow1960

Tomoxifen
I have been on it for 5 months. I have leg cramps, hot flashes that last more than a minutes, bruising, and hypoglycemia. I had none of these symptoms before tomoxifen. So I do not know if they are all related, but it gets aggravating dealing with them. Vit E seems to help with hot flashes, with my drs approval. I will not go off the drug yet, because I have my family. No chemo either, just radiation.

missingtexas

Faith1122 said:

Thank you all! I am having
Thank you all! I am having anxiety just thinking about it. Well I am having anxiety about everything since having cancer. I am going away with my husband in June to Turcs & Caicos. My first trip without my kids & I don't think I want to start it until after the trip. I just want to relax & enjoy myself before any of that begins. The past 5 years have been rough, I got diagnosed with Hashimoto's thyroiditis, adenomyosis - took lupron injections for 6 months 7 then still had to get a hysterectomy. Now BC & had to reschedule my mastectomy because I got pneumonia. 5 surgeries in 1 year. I need a break.

I haven't had a whole lot if
I haven't had a whole lot if side effects. I've been on it for 1+ year. I'm 40. My periods are a mess but nothing major. Just heavier. Some joint pain but that seems to get better with exercise.
Good luck!
Dana

kimg1

buggywidow1960 said:

Tomoxifen
I have been on it for 5 months. I have leg cramps, hot flashes that last more than a minutes, bruising, and hypoglycemia. I had none of these symptoms before tomoxifen. So I do not know if they are all related, but it gets aggravating dealing with them. Vit E seems to help with hot flashes, with my drs approval. I will not go off the drug yet, because I have my family. No chemo either, just radiation.

Tamoxifen
I started getting extremely cold about halfway into radiation treatment for breast cancer (no chemo). The extreme cold went away for awhile, but now that I'm on Tamoxifen, it's back. It feels as if my insides have turned to ice and I wish desperately for another hot flash. Has anyone experienced this kind of cold?

Also, I now get leg cramps at night, too.

LoveBabyJesus

My exp.
Hi -- I started last Aug. of 2011. I had bad depression for a few weeks and was mostly very moody. That stopped and I am doing well with it. I get ultrasounds every 6 months since I tend to develop ovarian cysts. Not sure if these are a cause from the tamox or just my physiology, since I'm only 34 and still ovulating. I also have no kids and it would be tough to remove everything now, which is why I haven't done that. You just need to keep checking your ovaries and uterus to make sure they are healthy while on tamox (and even when not taking tamox!).

Honestly? I was scared of this pill. but I am more scared not to take it.

Good luck to you!

tookiebird

We are all different
These posts align with my experience and those of the women in my support group: most women have few side effects or manageable ones. This is a well-studied drug with a long history. However, some very few of us do have side effects (my general practitioner tells me that many women stop tamoxifen b/c they cannot or don't want to tolerate it). I had bad side effects including major tendon problems, mood swings, hot flashes so with doctor's advice I stopped.

Here is the deal: you can try it, and you likely won't have side effects anyway. Most women don't. If you do there is arimidex and there are other meds as well. Often ladies find they can tolerate one or the other quite easily. When you stop the side effects go away ( for me I still have mild hot flashes after 4 years but they are ok). I agree that it is so scary to contemplate taking it, when you are so ready to be done! But as I say, most really do tolerate it pretty well.

I had my oncologist run my numbers for me and my recurrence risk was very very low anyway and the side effects bad so I decided that the small risk was worth stopping, for me. You will find the right program for your body. Good luck!

Faith1122

tookiebird said:

We are all different
These posts align with my experience and those of the women in my support group: most women have few side effects or manageable ones. This is a well-studied drug with a long history. However, some very few of us do have side effects (my general practitioner tells me that many women stop tamoxifen b/c they cannot or don't want to tolerate it). I had bad side effects including major tendon problems, mood swings, hot flashes so with doctor's advice I stopped.

Here is the deal: you can try it, and you likely won't have side effects anyway. Most women don't. If you do there is arimidex and there are other meds as well. Often ladies find they can tolerate one or the other quite easily. When you stop the side effects go away ( for me I still have mild hot flashes after 4 years but they are ok). I agree that it is so scary to contemplate taking it, when you are so ready to be done! But as I say, most really do tolerate it pretty well.

I had my oncologist run my numbers for me and my recurrence risk was very very low anyway and the side effects bad so I decided that the small risk was worth stopping, for me. You will find the right program for your body. Good luck!

Saw my oncologist
on Monday & he said my cancer was very small. 70 % of it was pre cancer cells & 30% was cancer. My breast surgeon recommended a dbl mastectomy because of family history & my oncologist recommends tamoxifen because of my family history as well. He said if I decided not to take it he would be ok with that. He does recommend it. I feel better knowing if the side affects were that awful it wouldn't be the worst thing if I went off of it. I will try it after my vacation with my husband in June so I could have a few deserved days of peace.
Thank you all for your advice!
xoxoxo