Worried about starting Tamoxfin

ppurdin said:

Tamoxifin
I have been putting off starting tamoxifin.I was taking arimidex for 4 months.And like many medicines i take i have most of the side effects.My hands hurt so bad taking it I could barley use them and they would go numb at night and wake me up.After two weeks of stopping this med. i feel so much better.But i started taking Tamoxifen two days now.I Pray it don,t give me bad side effects.Its seems to me that maybe their isn,t as many side effects as arimidex has.Good luck to you.hopefully we will do ok on it.

I haven't taken tamoxifen
I haven't taken tamoxifen yet either. I am still afraid of the side effects and it seems that so many on here that had recurrences had taken it. It is an individual decision if or when you take it. Just get all of the facts and do what is best for you. Good luck!

Leeza

I LOVE your screen name...
I'm into my 5th year of taking Tamoxifen.

I was 49 years old when I had a total hysterectomy as a result of my rectal cancer (needed to 'clear the surgical field' as it were, for my bowel resection) that preceeded my breast cancer. Obviously, you and I went thru 'surgical menopause'. Quick and dirty...lol!

I do not have mood swings, and only an occasional hot flash. At the end of this year, I will no longer be taking the Tami, and I don't plan on taking anything else. The Aromatase Inhibitors (the alternative to Tami) can cause bone loss and raise your cholesterol. I am osteoporotic and have borderline high cholesterol. So, even tho eligible for Femara and Aromasyn, etc, I'm not going to take them for the 1% risk difference.

That said, everyone is different. I had extremely bad times with my chemo, and am usually very drug sensitive. I don't notice the Tamoxifen at all....without my ovaries, there is very little estrogen left for Tami to deal with, and I cut it even further by watching how much soy (natural source of estrogen in some soy products) I eat.

Don't be discouraged if the first 2 months have some symptoms. I can't tell you whether the hot flashes during this time period was because of the surgery or the Tami. BUT they did get better, and, as I said, my body tollerates this well.

I will, however, be happy when I don't need anything at all...except my Actonel/calcium for the chemo-induced osteoporosis, of course!

Hugs, Kathi

CypressCynthia said:

Just do it!
I took tamoxifen for 7 years as we weren't sure how long I should take it back in 1987. The main problems you might encounter will probably menopausal type symptoms (hot flashes, night sweats, etc.). There are medications which can help with this such as some of the antidepressants (lexapro, effexor, cymbalta). Stay away from Paxil as it can increase risk of recurrence. There are other meds that can help--talk to your doc if you have a problem. About the 5th year, I noticed more afternoon fatigue. That was all for me.

after aweek I feel ok, some
after aweek I feel ok, some nausea so I switched to taking it at night. I am on lexapro so maybe it helps the hot flashes. i get a few but no big deal , and no more than pre tamoxifen so far.....

FYI
info from the Susan Love Research Foundation...This finding confirms previous research which suggested that the side effects of tamoxifen were an indicator that the drug was working and that women who were not experiencing side effects were not getting the full benefit of the drug because their body was not metabolizing it properly....
~~Connie~~

bluwillo said:

Curses, foiled again!
Drat! I was just going to brag about the lack of side-effects from Tami...
I had a total hysterectomy about 25 years ago, so did the rapid menopause. My onc said I might get some side effects, but he wasn't sure. (I've noticed he's never absolutely SURE about anything! way to cover his behind!)

So, I take Tami before I go to bed. No hot flashes, no mood swings, maybe some increased pain in my osteoporosis affected hip and back. The funniest thing, tho, is one week was kinda "growly" around here. DH was crabby, so I asked him if he had changed his meds. He got all superior looking and said the problem was me, I was crabby because of the new med (Tami) I had started. What was so hilarious was that I was still doing rads, and hadn't even started Tami yet! Guys!

So, now, if I'm not having side effects, Tami is not doing her job? She's not metabolizing very well? Maybe if I fed her more chocolate, that would help? That's how I'm going to deal with this piece of news. I will always find the positive, and the chocolate!!

I was told that by my onc
I was told that by my onc that tamoxifen seems most effective in women with side effects. I have noticed an increase in depression, but its hard to tell as I have not felt well this weekend and people do experience that post treatment. I am grouchy but there could be many reasons for that too. whats the alternative, remove your ovaries and take arimedex? I know there is a test to see what kind of tamoxifen metabolizer you are. my doc doesnt do it.

crselby said:

FYI
info from the Susan Love Research Foundation...This finding confirms previous research which suggested that the side effects of tamoxifen were an indicator that the drug was working and that women who were not experiencing side effects were not getting the full benefit of the drug because their body was not metabolizing it properly....
~~Connie~~

The flip side
I asked my Onc the effective-only-with-side-effect question. My only side effect is being a little over emotional (crying over coffee commercials, etc). He said the side effects of Tamoxifen are as varied in type and strength as different women's menopause symptoms. He assured me there was no connection between wicked Tamoxifen side effects and its effectiveness. Imagine my confusion!

Connie

Not a biggie for me
Good morning, purplegingerale! I've been on tamoxifen for about 3 months. Only side affect I've had are the hot flashes. No mood swings for me! (I'm just always so pleasant, don't you know!) Pros are the obvious - it blocks estrogen from getting to any wayward cells that feed on estrogen (if you're hormone positive). The cons are the more serious side affects, i.e. uterine cancer (1/10 of 1% of women), stroke, blood clots. My GP said that if I should begin bleeding, come in right away because uterine cancer is slow growing and highly treatable. For the blood clot thing, just don't sit in one position for forever - like on an airplane or in a car. Get up/out and walk around a bit. So far, I'm doing just fine on it - and I'm going to do whatever I can to avoid a recurrence! My family is too precious to me to have them go through losing me!!
Much grace in your decision making...
Beth

CypressCynthia said:

Just do it!
I took tamoxifen for 7 years as we weren't sure how long I should take it back in 1987. The main problems you might encounter will probably menopausal type symptoms (hot flashes, night sweats, etc.). There are medications which can help with this such as some of the antidepressants (lexapro, effexor, cymbalta). Stay away from Paxil as it can increase risk of recurrence. There are other meds that can help--talk to your doc if you have a problem. About the 5th year, I noticed more afternoon fatigue. That was all for me.

Take it when or if you feel
Take it when or if you feel like it. Don't take it before you feel you are ready too.

Good luck!

cvolk821 said:

The flip side
I asked my Onc the effective-only-with-side-effect question. My only side effect is being a little over emotional (crying over coffee commercials, etc). He said the side effects of Tamoxifen are as varied in type and strength as different women's menopause symptoms. He assured me there was no connection between wicked Tamoxifen side effects and its effectiveness. Imagine my confusion!

Connie

I thought I was the only one
I thought I was the only one that hadn't taken that little white pill, but, I guess I am not. The side effects still worry me.


Hugs, Angie

Hi,
My onco. put me on
Hi,
My onco. put me on Aramedex (sp) instead of Tamoxfin because I am 63 and had a total hyst. when I was 42 and on hormones for 14-15years. She said that was way to long and could have caused the cancer. Women aren't on the hormones for so long any more.
Hate to tell you .. I had mood swings and crying the first month or so. They are way less now but the HOT FLASHES and CHILLS are terrible. Not unbearable but terrible just the same. She said that some women stopped having the side effects after a year and some went the whole 5 years with side effects. Sorry to give you the bad news. No one told me and I wish I had been told. Not that I could do anything about it.
Maybe you will be lucky and not have them. Some women don't get one side effect.
Whatever good luck and my Prayers are with you.
I found this site a few weeks ago and it has helped me a lot. Hope the same for you.

Many hugs and prayers,
Diana