3 months on Tamoxifen and side effects adding up- STRESSING OUT!

Many women experience side effects on Tamoxifen. Some here have stuck with it and say the symptoms improved. Mine did not, so I discontinued the drug. My oncologist said that because my side effects were so terrible, didn't improve even with a half dose, and my risk of recurrence was very low he would have advised his own family member to quit. It's a personal decision, but I don't regret quitting, not at all.

My tamoxifen side effects have only gotten worse over time. Sorry. At least we're not alone in this, right? I need to keep taking it though, I can't handle the idea of the increased risk going without.

I lasted 9 months. My hot flashes from the start were consistently every 2 to 4 hours around the clock. The nights were horrible. I also had this strange numbness in the face thing going on- all over. That lasted 3 months but then subsided.

The worst for me was the joint pain. Just kept getting progressively worse. Started with painful feet in morning. By the time I quit my hips were aching all day regardless of if I was sitting or standing. I’ve always been a runner - if I did run on Tamoxifen I’d be incapacitated for a week. If I banged my arm against a wall, a week of pain. I was falling into a serious depression. Went to MO and she agreed with me 100% that I couldn’t stay on it.

I’m fine with my decision - no regrets and no fear.

How long before everyone started having side effects, especially hot flashes? Did it take awhile or was it the second day? thanks!

flag, I was never on tamoxifen but anastrozole. It seemed to build up to a peak about 1.5 years in. The joint pain was unbearable at night and in the morning. I never stopped the treadmill 3.5 miles everyday or swimming.

I switched to exemestane, worse dry eye and skin issues had to stop swimming. Now off everything still after almost 3 years have lingering pain. I wish I never started exemestane. Not sure about anastrozole but never had a single joint pain before any of this.

I'm on year 6 of Tamoxifen. I've had almost all the SEs, including some liver function issues, but over all it's all calmed down. I took effexor for a few months to reduce some SEs, but had some serious problems with it. It's a hard balance. Quality of life if something that doctors know is an issue, but their job is to keep you going, not to worry about the nuances of your daily life. I wish there were more focus on QOL from the medical profressionals we deal with.

I can say that for me, things improved.

Best of luck on your path!

I had symptoms of headache and nausea on and off during the first year with some night sweats and hot flashes. Leg cramps too. I’m several months into my second year and am doing great on it. An occasional symptom here and there but it really doesn’t affect my everyday life like it did during the first year. If it stays like this, I can do the full 10 years.

VL22, absolutely. I just started in the last few weeks, every other day until this weekend, now trying every day. I haven't had hot flashes or some of the other SEs, but my already-arthritic joints are screaming at me, and the odd leg cramps have started. I keep thinking, okay, this isn't killing me, but then again, it's not much of a way to live, either. I'll try to stick it out for this month, and add magnesium and Claritin. If it's not better by February, though, I may bail and take my chances.

See your doctor. He or She may give you the option of having your ovaries removed and discontinue Tamoxifin. Some will still want you on Tamoxifin but it's always your right to refuse. My side effects have increased and gotten worse over the last 3 years to the point that I can't think clearly and my bone pain is debilitating. I've taken all of the others and they were worse. I'm opting to have mine removed most likely.

VL22....I totally agree! IMO when someone starts a thread like this its not helpful to hear that others are doing great on it. I'm happy for those who do well on it. I wish everyone did well on anti hormone therapy. However if that was the case the compliance rate would be much higher. These feelings need to be validated first and then ways to cope might be helpful. My only goal for this post is to support those who need it and to strive for better treatment options.

If you experience unbearable side effects, don't stop yet. There may be another solution. First, just try to take your prescribed dose in the evening, at dinner time or just before going to sleep. If your condition doesn't approve after a couple of months, ask your oncologist if s/he allows you to switch to a half dose. Even half a dose is better than nothing.

After 15 months on Tamoxifen I just couldn't take it anymore. I experienced many side-effects and was hardly able to work. Life looked black and bleak. I then switched to taking half a dose (10 mg) in the evening instead of taking the full dose (20 mg) in the morning. This made all the difference. I actually got my life back. I still experience side effects, but it's very doable.

I'm now on a temporary break of Tamoxifen because of vision problems, but wouldn't mind going back to it.