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Tamoxifen

Titch22 profile image
12 Replies

I’m about to start taking Tamoxifen, which I’m dreading, and wondered if any of you lovely ladies could share your experiences with this drug.

How quickly did you start to experience side effects?

What side effects did you have?

How did you manage them?

Is there a best time to take the drug, morning/evening?

Have you put on weight?

I know we are all different, but any help you can give me to put my mind at rest would be appreciated.

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Titch22 profile image
Titch22
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12 Replies
Melzywelzy profile image
Melzywelzy

Hello, my side effects started about a month after starting, hot flashes. I just deal with them. I have not gained weight from it but I do excercise and watch what I eat. It has reduced my cholesterol. i take it in the morning.

Titch22 profile image
Titch22 in reply to Melzywelzy

Thank you for your reply, I’ll be starting in October so hopefully I won’t get too many side effects. Thank you for sharing.

Melzywelzy profile image
Melzywelzy in reply to Titch22

Hope all is going well for you.

LeslieVa profile image
LeslieVa

I had a lot of Hotflashes and did gain about 15-20lbs. I have always eaten healthy and have worked out 5 days a week. Lost the weight once I got off the Tamoxifen. It’s not bad and well worth it!!!

marybv profile image
marybv

I have been taking Tamoxifen, in the a.m., for eight years with almost no side effects. Every once in a while, very infrequently, I'll get a minor hot flash or night sweat. I hope that you have my experience on this medication! Good luck!

Nycfriend113 profile image
Nycfriend113

Hi.. I know it's all scary, but compared to the aromatase inhibitors (AIs), Tamoxifen is generally the most well-tolerated (not to say that the AIs aren't). I had no problems on Tamoxifen for 3 months and then I developed a significant rash. it wasn't 100% clear that it could be attributed to the Tamoxifen, but both my oncologist and dermatologist recommended stopping it, which I did. Again, not sure if the 12-day course of steroids or stopping the Tamoxifen helped, but the rash resolved. Now I'm on Arimidex (anastrazole) and am doing fine.

Good luck and just be sure to keep up with your gyn appts. for Tamoxifen and VERY RARE risk of endometrial cancer (and ONLY indicated if you have bleeding, etc.).. Sure you'll be fine.

Titch22 profile image
Titch22

Thanks for your replies, judging by all your comments it appears we’re all different so I’ll just need to wait and see. Fingers crossed I won’t get too many. Thanks for sharing ladies x

BklynCatwoman profile image
BklynCatwoman

I felt great being on Tamoxifen but unfortunately, my uterus didn't! Because I'm post menopausal, I was closely monitored with a pelvic sonogram every 6 months which found the abnormalities that weren't there before I started Tamoxifen. But I had no pain, no bleeding and no weight gain, no hot flashes. It seemed to agree with me better than the aromatase inhibitors did. But as you know, everyone's body is different and reacts in different ways. I wish you good luck and good results.

RobertaG1961 profile image
RobertaG1961

I am a 21 year survivor. I started tamoxifen about 20 years ago.

I have had a weight problem (overweight) my entire life. I was determined to lose the weight I put on during chemo (40 pounds). I lost the 40 pounds (Weight Watchers) while I was on tamoxifen.

I went into menopause during chemo and the hot flashes were horrible. I don’t remember if the continued on tam.

I got advice about hot flashes which I will share with you: 1) drink lots of cold things as soon as you feel it coming on and 2) wear natural fabrics. I also found sitting in the car with the AC blowing right on me was very helpful <grin>.

I stopped tam when I started developing uterine polyps after 2.5 years. There was no Aromatase inhibitors back then.

Read up on the side effects so you know what to watch for. From what I understand from reading, the serious side effects seem to be very infrequent.

Also read up on the benefits which will make you feel better about taking it.

Titch22 profile image
Titch22 in reply to RobertaG1961

Thank you for sharing your experience, sounds like you’ve had lots to deal with so I’m glad tamoxifen hasn’t been too bad for you. I’ve researched loads good & bad, but its not the same as getting direct info from others who have or still are taking it. I’m very nervous especially as I’m feeling so much better so the thought of going backwards again is something that fills me with dread. I’m just going to have to man up, take the plunge & see how I get on.

Kortkrop profile image
Kortkrop

I've heard of varying results. I was on it for 2 years, until menopause. I had no issues with tamoxifen it with menopause. My friend had bad night sweats.

no weight gain due to the drug, just to eating the wrong things (which I've always had trouble with.)

ShellyLKB profile image
ShellyLKB

Everybody is different. If there was no tamoxifen, I would not have stayed on arimidex/anastrazole nor on exemesthane. Hot flashes from all of these. Muscle cramps from tamoxifen but they are manageable. Tamoxifen is a walk in the park compared to the other meds for me. Tamoxifen is the only one that didn't painfully dry out my vulva and vagina and hurt my joints to make walking painful.

Again, everyone is different. Good luck.

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