Is there any one who felt good on Tamoxifen

I asked my gynecologist about taking tamoxifen and after talking through my concerns, she said the majority of her patients do just fine. If I had any troubles with vaginal atrophy, to come back and see her for help. It was nice to hear that it may not be so bad after all from a less invested source than my oncologist.

Hi there - was on Tamoxifen for just over a year after not being able to cope with Anastrosale - first off seemed okay then after about 6 months started having a problem with my eyesight - I have glaucoma and thought was to do with eyedrops - but long story short - it was not the eye drops - so I decided to stop the tamoxifen for a while and after just under two weeks, the problem of 'mistyness' in the distance had disappeared. That confirmed it for me and I know we are all different and my doctor does not agree with me stopping - I shall not continue to take it - I am 75yrs old and old enough to make my own decisions (!) and for me it is quality over quanitity any day.

But try it -you may well be fine with it - hope it all works out for you

Regards

Hi PurpleCat, not sure if that is true. But blood clots are a real risk. My MO recently gave me an injection to thin my blood because I'm flying long distance 8hrs+. Specifically to reduce risk of blood clots because I'm on Tamoxifen. A good friend of mine was also on Tamoxifen for 5 years no issues and travels a lot and said as long as she wore compression socks and took the injection she felt comfortable. Just to manage that risk.

Agree - I have this thread in my favorite topics. I'm meeting with the oncologist tomorrow now that I just finished rads to discuss starting tamoxifen. I plan to ask him all my questions and concerns about side effects, risk scenario for side effects, and whether he has any recommendations to minimize side effects that do NOT include removing my uterus.

If anything good comes from the conversation, I'll keep people posted!

(also waving hi to PurpleCat from the December radiation thread )

I had absolutely no side effects on Tamoxifen. On Arimidex, I've had joint issues, and bone density loss. Although after two years on Arimidex, joint issues are improving. Possibly due to exercise and weight loss, or perhaps I'm just adjusting to it

I had painful foot and leg cramps in the beginning. I feel like it takes your body awhile to adjust. I have been on tamoxifen since October 2015...so 3.5 years now. The cramps are gone, and other than not having my period (a side effect which I love, if I'm honest), no issues here. I gained some weight in the beginning, but now that's starting to come off too. Good luck...

I've been taking Tamoxifen for about 7 months. Some SEs ( like joint pain in joints where I have arthritis) are difficult to differentiate between a SE and what would have happened anyway. Usually I don't have hot flashes but am cold instead. Other than getting up and walking about every 1.5 to 2 hours when traveling to help prevent DVT the main things I have done are those things recommended to help prevent a recurrence: weight loss (occurring much slower after starting Tamoxifen but still happening), healthier diet, more exercise(walking 10,000 to 12,000 steps a day), and lots of fluids. If I don't do the latter three I am quickly reminded by the threat of my one most consistent SE, constipation.

All in all, I agree that doing what we can-- and taking Tamoxifen is what is left on the prevention agenda-- is well worth doing!

For all who are concerned, please don't let other's negative experience convince you that is the experience you will have. You really can't know until you try and many people report that their SEs are much more tolerable after a few months or so. Also, to agree what others have said, there are likely more reports of negative than of positive experiences because many of those with positive experience have "moved on".

I'm 6 weeks into tamoxifen and so far so good. Although I'm at half dose (10mg) right now, going to discuss with my onc. whether it's really necessary to go to full dose (I'm 5 ft., and there are starting to be some studies showing smaller doses are just as effective) or whether I can continue at half dose. I did have mild nausea twice, but that also might be because I didn't eat. If I eat and take tamoxifen, there's no nausea.

Hoping this continues! Will be a much more manageable 5 years if so!

I just started my tamoxifen last night, March 1. I was given the 20mg dose as well, but decided to start myself off a little at a time, as I too am a fairly thin/small woman (I am about 5'6, 118lbs). I agree that it doesn't seem that a "one dose fits all" regimen should be appropriate. I decided to start by cutting the pills in quarters and staring with 5mg, just to see how my body reacts and adjusts. If that goes well over the next week or two, I will bump it up to 10mg, etc. I have seen other women on these threads do the same thing.  I have also come across the recent publication regarding 5mg dosage for women with DCIS. While I realize that doesn't apply to IDC, it does seem that some would at least be better than none. 

Honestly, the absolute benefit of tamoxifen is pretty low for me with my tumor stats (approximately 3%), so if I can't tolerate it, I think I could live with the decision not to take it. I figured I would at least try it and if I have no SE's then I will take it. But I really think oncologists need to do a better job at letting their patients know the difference between absolute and relative risks of recurrence with and without the drugs.

Hello Dhanno, I started 10 mg of Tamoxifen on 6/1/18. I was so nervous and leary of the noted SE. I feel blessed to report that my SE are minimal. Slight anxiety and rarely, night time restlessness. I take my dose 1 x/day right after breakfast. I take in the a.m. to try to avoid stomach upset and insomnia. I also take a low dose aspirin to help ward off any blood clots which are rare, but my biggest worry. My MO would like me to stay on T for 1 year after I am through menopause and then switch to another post menopausal med. I just turned 53 and would really appreciate it if things would just get going. Best wishes that your T experiences will be as good or better than mine. Hope this helps in some way. Take care.

Hi all- just wanted to post an update. I saw my oncologist yesterday and he was fine with me staying on the 10mg dose until our next visit, possibly for the entire 5 year stretch, which was such a relief to hear! I think he'd like me to give the 20mg dose a try at some point and I might actually, but since I'm tolerating 10mg so well and he knew of all the recent studies, I think he's thinking more long-term that better to have me stay on this dosage for the 5 years than quit early and not take anything at all.

RE: feeling better on tamoxifen (original topic of the thread), I would say there are 3 areas that appear to be better than before!

1. I sleep better than before. I used to be a night owl, not able to fall asleep until past midnight, and staying up on my computer or phone late into the night. Now I'm pretty ready to sleep by 10:30 or 11pm, I have no trouble falling asleep (I used to!) and I sleep through the night and wake up refreshed the next morning. I think it's better for us to get our full 7-8 hours sleep.

2. I remember my dreams, and yes probably have more vivid dreams. I think they say that happens on tamoxifen - I suppose as long as they are good dreams, this is a cool new thing.

3. Not really minding the hot flashes in the winter! And a hot flash for me appears to be pretty mild - I take tamoxifen in the evenings, at some point later, I just feel like I have to open the door and let some fresh air in. Then later I close it because I'm cool again. I do think this is tamoxifen related because I usually am freezing cold and need to hike the heat up like crazy (I have a portable heater under my desk at work and still have it on most of the day!). But I'm really not minding that I actually get warm enough to want some fresh air, and later on I'm feeling normal enough that I can still cuddle up to my husband. It's nothing sweaty or discomforting.

RE: other side effects, I had some nausea the first week but that went away and I haven't had it since. Maybe my body was adjusting to tamoxifen, maybe it was because I didn't eat much those days, who knows, but it's not happening now. No joint pain, possibly because I'm good about keeping up my movement and stretching and flexibility (I have a dance background). Nothing else discernable, but who knows if there's something that I can't feel, I did get all my baseline blood tests and I plan to measure again in a few months to track my liver enzyme panel, cholesterol and all that. When I visited the doctor yesterday my blood pressure was good, so no concerns there.

I started Jan. 16th so I'm almost 2 months in. Keep in mind I'm at 10mg still and not 20mg yet. That might be part of why I'm having a better time on tamoxifen so far?

I've just completed 2.5 years on Tamoxifen and switching to Arimidex (anastrozole) until I hit the 5 year mark. What I am experiencing could easily be blamed on menopause: hot flashes, night sweats, weight fluctuation, stiff/achy joints, insomnia, fatigue. My menopausal friends have the exact same complaints.

Hi Engel 12345. 

It all has to do with relative vs. absolute statistics. With my low oncotype score, my chance of recurrence WITH tamoxifen is approximately 3%, according to my oncoytpe DX results. The theory is that tamoxifen reduces recurrence rates by approximately 30-50% (this is the RELATIVE risk reduction). So, assuming that tamoxifen is reducing my changes of recurrence by up to 50%, then I can extrapolate that my recurrence risk WITHOUT tamoxifen is only approximately 6%.  So the ABSOLUTE risk reduction with tamoxifen is only approximately 3%. Most medical data are presented as relative statistics. Most oncologists are not going to tell you this, because I think to them, any reduction in recurrence is good, no matter how small it may seem.

Now with all that being said, someone is going to end up being that 6%....and yes, these are just numbers and probabilities and sometimes cancer does whatever it wants that. This is what makes these decisions difficult. I am giving the tamoxifen a fair chance. If the side effects become unbearable, then I will have to re-evaluate my decision. 

Hope that makes sense.

I have been on Tamoxifen for 6 years now. The only side effect that bothers me are the hot flashes that happen during the summer mostly.. Otherwise I feel fine. I do take it in the morning.

Today is the 10th day my wife started to take tamoxifen and so far she is not feeling any obvious SEs, However, the pills were a little too big for her to swallow, she broke it into 2 pieces on two days. Today when we mentioned this to the Nurse Practitioner and she said we should not do that. Is 10 mg tamoxifen smaller than 20 mg one? Can she take 2 of 10 mg instead or ask for liquid form? Would insurance coverage be an issue? Thanks a lot.