Supposed to start Tamoxifen. Positive experiences welcome!

Bluebirdgirl

I am three weeks post BMX, am also going through a scare with a lesion on my liver now too. My oncologist said he wants me to start tamoxifen (my path report says I have 95% estrogen) and that this will cut my risk of recurrence by 50 - 55%. I am really nervous about taking this as I have heard about all the negative side effects. I have two friends who took it, one had no side effects and the other had joint pain and headaches and then her liver counts started going up so she switched to something else, which threw her into menopause. Can someone please share their experiences with tamoxifen, hopefully positive ones. I am 49 and probably perimenopausal . Only threads I can find on this are from 2013.

Thanks!!

plumster1

I have been on tamox for a little over a year. No real side effects. I have gained 5 pounds... But if that is the worst of it to keep me healthy it's worth it. I also have 4 other friends on tamoxifen and they are all handling it well too..some hot flashes but nothing terrible. My BS and MO told me most women handle it well with no real side effects...hopefully that will be the case for you too.

Bluebirdgirl

Plumster1, thank you so much for sharing that!! Gives me hope! I notice your signature says you are ki67 5%. What does that mean? Mine says Ki67/MIB-1 immunoreactive in 40% of the tumor cells. No one has ever told me the significance of that. Just curious if you knew. Thanks again!

NineTwelve

I was put on Tamoxifen as a first line of treatment for my stage iv BC. It shrank all my tumors and actually cleared up the mets in my lung and bone. It is a powerful tool in this BC toolbox. My side effects were minimal. I lost weight on it (15 pounds) and had to buy new clothes.

I have never had bad PMS or unbearable menstrual cramps. I do wonder if there is some correlation between severe PMS and Tamoxifen intolerance. I wonder if anyone has even done an informal poll.

Also, it seems, from these threads that those having the worst experience with Tamoxifen are often the younger women who are further away from menopause. (I was 54 when I started it, but not yet menopausal.)

Bluebirdgirl

NineTwelve, very interesting. I am 49 years old, will be 50 in April. I have always had bad PMS, not sure I would call it severe, however. So I guess I will see if your theory is right. We SHOULD have a poll, would be curious to see the result. Thanks for sharing!!!

Anonymous

How about this for a positive experience? I can't remember how I felt while taking it--(I took it for a year)! That tells me that I had no adverse affects at all from it, because I would have remembered (I will never forget the short time I spent taking Arimidex, ack). Tamoxifen was a non-event. I hope it is for you, too!

Claire in AZ

Bluebirdgirl

claireinaz, thanks! I am feeling better and better. Just took my first pill today. Trying to keep a positive outlook.

Cancerpickedthewrongone

glad this post was started & more importantly that I found it ; I am minutes away from taking my first Tamoxifen and needed some positivity; so this was right on time.. Thank you!

Bluebirdgirl

hi, cancerpickedthewrongone (I like that username) sounds like we took our first tamoxifen pill within hours of each other. Good luck to you!! I'm sure we will both be fine

Carlsoda

I started tamoxifen on August 10th and so far no side effects...and I am gaining confidence every day that I likely won't have any side effects! Good luck!

Sickofpink

HI there, I finally found relief on Aromasin, which I take with Tumeric, and magnesium (and bone strengtheners) and B12 and D. Lots of flax seed. Tumeric made the most difference with stiff joints. Still get lots of hot flashes tho. Good luck!

Lvbugs

No bad side effects here either. Even have been able to lose weight. Good Luck

Bluebirdgirl

Oh, these comments are making me feel so much better!!

Anonymous

I've been told that I'll need to start it also, probably in October. I'm scared of it, but my onc tells me that 90% of his patients either don't have symptoms, or have symptoms to which they easily adjust without disrupting their lives. I'm holding onto those words -- and the positive experiences that you are all sharing. Thank you!!

starsarestars

hey ladies,

What brands of Tamoxifen are you taking with no side effects? Anyone know what s the latest newest? My pharmacy has switched brands on me from The Watson to Mylan. I've just started getting used to the Watson side effects: hot flashes, itching and gained 10 lbs. Scared of switching and getting worse.

Thx

Sjacobs146

I have been taking Tamoxifen for about a year and a half with no side effects. I just turned 50 this past summer. I don't know if I am in regular menopause or not because I have not had my period since chemo. My MOmsays that only 25% of her patients have any side effects from Tamoxifen, and only a handful have severe side effects. Good luck to you, and I hope,that you avoid side effects

Katja23

I've been taking Tamoxifen since mid-April and have experienced no side effects at all. I am 51 and pre-menopausal. I lost a little weight, because I started exercising more. I don't think Tamoxifen would have any effect on my weight.

Lisey

I'm on the TEVA version from the Kaiser Pharmacy. I'm an Ultra-rapid metabolizer of Tamoxifen (so should have lots of SEs).. but I have NONE... ZILCH... NADA... It's like a sugar pill. Ill take it. : )

Lisey

Also Ki is a way to measure aggressiveness, however it's an eyeball test and studies have proven that there is no standard for pathologists so what is 5% to one leading pathologist is 30% to another. My '30%' must have been one such eyeballing error because I'm Luminal A and A's don't have high kis. anything over 20% is high.

Carlsoda

Starsarestars; I am on Mylan (the epipen people in trouble) and it is going well. I think I may have been having a small hot flash here and there this week but I am also fighting a virus so maybe not either way I am pleased with tamoxifen as no real issues to even worry about! My only complaint is sometimes the pill gets stuck at the back of my throat and it tastes icky! :

chelle44

I have been on it for three weeks and besides sweating at night (I don't feel hot) I am just sweating I actually feel terrific. I was so scared. I would even say my energy level is up. May be unrelated but I'll take it.

TinyDancer5

I've been on the Watson brand since January with very little side effects. Hot flashes and chills for the first two weeks and then it went away. I sometimes get very warm while sleeping, but just throw the covers off for a while.

KentRunner

Thanks for posting this. I'm going to follow since I'm due to start Tamoxifen in a couple of weeks. Nice to hear some positive results!

CarolAG

Hi Lisey,

Just wondering, what do you mean when you say ultra-rapid metabolizer of Tamoxifen?

MirandaPriestly

Hopefully I'm not speaking too soon...but Thursday will mark 3 weeks on Tamoxifen for me and I really haven't noticed much for side effects. Some nights I wake up really sweaty (not hot, though) and I had a few cystic acne pimples pop up around week 2, but they have since gone down. Fingers crossed this is it!

Wishing you all the same luck!!

Bluebirdgirl

I'm so glad I started this thread, has eased my worries. Glad everyone is doing well!! I've been on it a week now. My restless leg syndrome (RLS) has reared its ugly head again and prevented me from sleeping well. BUT that could be because I had stopped taking my magnesium glycinate for it when all of this cancer stuff started happening. So started the magnesium, been on it four days now and I slept a straight 6 hours last night!!! Happy dance!! ALSO, to anyone taking an antidepressant, check that yours isn't contraindicated in use of tamoxifen. I take Wellbutrin and it blocks effectiveness of tamoxifen. Don't you think the doctor would have recognized that? Geez. Have been a little depressed and weepy but that could be situational with all I have been through. SOOOO I guess the verdict is out whether these are SE's of tamoxifen or just coincidental. Only time will tell. I get my oncology second opinion Friday and will bring up some of these issues. Best of luck to you all. If I learn anything new and interesting Friday, I will share it with everyone

msphil

hello sweetie i was 43 when diagnosed n preparing for my 2nd wedding i am a 22yr Survivor Praise God i took tamoxifen for 5 yrs. God Bless msphil. idc stage 2 0\3 nodes Lmast chemo and rads and 5 yrs on tamoxifen