Tamoxifen, it's not all bad is it?

I was on Tamoxifen for 18 months with no negative side effects at all.  I did post on another thread that it did increase my libido and could think of nothing else but sex.  Tamoxifen worked wonders on my cancer during that time but suddenly just stopped unfortunately.

hi Stormynyte, I've been on tamox nearly two years, since July 2010, and no big problems.

Crepe-y dry skin and some issues with my eyes that may be heredity or may be the tamox.

It's hard to lose weight on tamox but with good nutrition and daily exercise, I've dropped 25 lbs since March 2010.  Ten more and I'll weigh what it says on my drivers license lol.

My mom was one of the first people to take tamox 30 years ago when it first came out.  She took it for the full five years without major issues, so that's what I intend to do if possible.

I've been on tamoxifen for two months now, but only 1/2 the recommended dose of 20 mg.  I wanted my body to adjust to it before increasing the dose.  So far, the only SE's I've had are hot flashes, and they could be caused from going off my BHRT.  Sometimes I'm a little tired, but that's about it.

Oh...I did have a little breakout on my face, but that has cleared up.

My MO said it is a very good drug because it protects from recurrence and prevents spread.  It also protects heart and bones.  What it does is attach to the receptors in the breast and when the cancer cells come along they are tricked into thinking those receptors are already taken, so they die off for lack of energy to survive. 

I've been pretty SE-free on Tamoxifen.  I get the "warm" flashes sometimes...not hot, just suddenly warm.  And I may be a bit more stiff than usual after sitting for a while, but I really can't complain.  Well worth it to me!!

I also went into chemopause and had hot flashes and night sweats that would wake me up for the first year, year and a half.  It gets better.  Night sweats are all but gone now and HF's are down to just a few a day.  Love my hand-held folding fan(s) and keep one handy at all times, just in case.  Got one in my purse and one in my desk drawer at work.

My libido is OK but I had to fight my onc to keep my ovaries.  I finally agreed to take the BRCA gene test and said I'd consider an ooph if positive.  It was negative so end of discussion.  Keep me on the tam another three years then we'll talk.

Just some hot flashes at night to start with.  Now they have decreased. Nothing else that I can tell.

Stormynyte, you're right that members tend to post here when they have problems; when things are going well, not so much. I remember seeing a similar thread awhile ago where members w/o SEs tamoxifen chimed in. Maybe you can scroll down or search to find it?

Prior to taking tamox, I asked my other docs (RO, BS) for their opinion. As my BS said, you can always try it and then quit. (which seemed like the perfect surgeon's answer. They don't get a lot of do-overs for surgery).  All my docs said that it could take 3-4 months for SEs to calm down and that was the case for me. My biggest SE was that I had problems sleeping. Realistically, I was also having a lot of post-Tx anxiety (and was being a control freak on food) so that might have something to do with it. Good luck

Stormynyte,

I had some hot flashes and joint pain for about 6 weeks, but then it cleared up.  Now, it's just a little discharge and somewhat irregular periods.  Other than that, it is a piece of cake.  I also take DIM (to help with estrogen) and Glucosamine Chondroitin (to help with joint pain.)  I plan on staying on this drug as long as they will let me.   

Hi there - I started tamoxifen in Sept, I believe.  Just like sweetbean, I had some hot flashes and a little joint pain.  At first had a couple other little weird symptoms but nothing that was too difficult and they went away after just a couple of weeks.  Honestly, for me, it's been no big deal.  Sometimes I wish I had a little more in the SE department so I would feel like for sure it's working.  I gladly take it every single day and am thrilled to have it as an option.  I think of it as my anti-cancer pill.  I think I read that glucosamine can be a counter to tamoxifen, so sweetbean, ask your doc to be sure.  I'll take this for 5 years, and then likely an AI for 5 years.  Best wishes to you all. 

I actually like some of the SEs. My hotflashes make me feel warm & occasionally a little sweating. Since I'm a person who tends to be "cold", I find them pleasant. I did have quite a bit of trouble with dizziness early on but that has lessened. Now I just feel like I'm a little bit drunk(can't think of a better way to describe it). But I'm finding that I don't mind that. I also like the dreams I'm having(not at all realistic) & I'm sleeping very well at night(probably better than ever). I'm hoping to stay on it.

Just a quick THANK YOU from me for starting this thread. I will start Tam in June after finishing chemo and after reading the nightmare stories was seriously scared of this. You have all made me feel better about it already :-)



Jenn

I have been on Tamx for 15 months and SE's have diminished. I no longer have night sweats and only an occasional hot flash. I do take SAM-e for joint pain and feel great. Exercising daily really helps - even just simple yoga or a long walk. But I still count the days until I can say goodbye to it!

I have been taking Tamo since Aug/2011. The only side effects have been hot flushes (no sweats), nausea and recently joint pain added to the mix. These SEs are tolerable for me and as it is working very well for me, I will continue the tamo until that is no longer the case.

I would encourage anyone to give tamo a try as not everyone has horrible SEs.

The stories on here scared me, too, but my MO telling me I could always just try it out and also having a higher risk of recurrence, I decided to give it a go over 6 months ago. It is honestly not bad at all! Towards the end of my rads tx, I did get pretty bad night sweats and I missed a period, but I think it was the cumulative effect with rads. The night sweats are nearly gone and so is the extra vaginal discharge. All I have left are the odd warm flushes (not real hot flashes) and some very minor joint pain that might just be impending arthritis (because my mom's started in her 40s). My periods are not 100% regular yet but they seem to be getting there, with no more missed months.

It is easy peasy for me to take a pill every night before bed, so much easier than driving back and forth to rads every day. If it helps prevent me needing more surgery, rads or chemo - than it is super worth it! Since I started telling people about my tx, lots of women in my life volunteered that they too have taken Tamox for 5 years without any real side effects. If they can do it, so can I and so can you. 

I have been on it since January and aside from the severe hot flashes and sleepless nights, I have no other issues. But that did start with chemo.I will be getting a hysterectomy soon so I will be off of it after that but my onco said I will have to take Armidex then.