Tamoxifen Positive Experiences Minimal Side Effects

Try this:  http://community.breastcancer.org/forum/78/topic/802604?page=5#idx_142 thread - there are quite a few of us with positive experiences!

Hi

I have been on Tamixafin for about a month. The SE have been manageable. Hot flashes and some aches and pains have been the worst of it. The aches could even be left over from the chemo. Anyway I feel the benefits outweigh the side effects!! Good luck.

I'm 49 and started tamoxifen November, 2011.  I have mild side effects that come and go.  Some of them, like the mild hot flashes, are probably also due to my age and perimenopause.  Don't let those with a bad experience deter you.  Try it for a while and see how you do. 

I feel like this is the one thing I can do to help my odds, so I'm taking it!

Hi,

I'm on Tamoxifen since middle of April and it has been a mixed blessing.  I had one hot flush so far, easily managed with a cup of fresh hot sage tea. What I am struggling with are the almost daily headaches, sometimes mild, sometimes pretty bad and not responding to Paracetamol at all, have to take the codein-combo which I hate cause I end up all fuzzy headed and can't have that when I have to function.Yoga is supposed to be great for hot flushes, maybe that's the reason I had no bother with them just yet.

I had no weight gain so far, something my sister in law had warned me about. AS I have been cutting down on wheat products as well (apart from cutting down on dairy) that might have saved me from piling on the menopausal pounds. I stopped having my mens in July which is brilliant, at last no monthly bloodbaths, cramps...anymore, yippieh!

Another unpleasant side effect is the nausea, but when I take the tablets at night straight after dinner on a full stomach it's not so bad. Sometimes I wake up though feeling pretty sick and I never had anything like that before so it must be the tabs.

Bone pains and joint pains might be an issue, the beginning of the treatment coincided with a bad case of Plantar Fasciitis (sore heel) for months, which is very very slowly improving, only to have strange pains on the top of my feet for no reason.

Other women from the local cancer group keep saying that the side effects will diminish over time anyway so I try not to dwell too much on them and just carry on the best I can. Other anti-estrogens would have other side effects, and the main thing is to be alive and well anyway.

"If I am menopausal, why tamoxifen and not an AI?"

I don't know if this will answer the question for you or not.  I'm 59 and stopped having periods when I was 56.  My oncologist said that for her purposes, I would be considered to be in menopause if I stopped menstruating at least two full years before my diagnosis. Since I was diagnosed at age 57, she didn't consider me menopausal yet and started me on Tamoxifen.  She originally said she'd switch me to an AI when I turned 60 but at my last appointment she appeared to be hedging on that so I'll have to see what happens.

My mother-in-law got breast cancer at age 85 in 2008 and took Tamoxifen for 5 years. Now that I understand more about breast cancer treatment, I don't understand why she wasn't put on an AI but I don't know much about AIs including whether they were available in 2008.

I have been on Tamoxifen for 3mths...My skin is a little drier..No hot Flashes...I had a hysterectomy yrs ago and maybe that is why..I am 62yrs..I want to see what the blood work results will be...I will go for that in December...I was considering taking this pill 20mg every other day than every day...Anyone else considering this?

Good Luck Ladies..

I took it for four years.  Only negative side-effect I noticed was the hot flashes.  Mine were quite mild compared to others.  May or may not have been the tamox -- I take Lupron as well.  What I liked was it cleared up my skin, which had always been oily.   And when I went on a weight loss campaign it was easy.

I've been on tamoxifen since July, and I've had minimal side effects. No hot flashes. Sore legs the first day. I've lost about five pounds. not bad at all!

Hi! I started looking up weight gain with tamoxifen and decided to check a more positive thread instead!!!



I've been on tamoxifen since mid February, right after radiation finished. I'm a holistic type who hates all this stuff, but I got married a month before diagnosis and I have a (now) 12 year old daughter and 18 year old stepdaughter. So, I'm doing everything I can to not only live to be here for everyone, but also to really be me, and not as miserable as my mom was when she lived through 10 years of this before giving up. She was wonderful, but had a very hard time of it all (and no, I don't have the genes that they know of!!!)



That being said, I gained 10 lbs upon diagnosis. I'm the type to eat during depression. Got through mastectomy and radiation, and when tamoxifen started, I was on a quest to lose the 10. I did!!! But recently it's coming back. I was really restrictive on my diet and now I'm treating myself a bit too often. I'm a former personal trainer, so I know about diet and I exercise regularly. I'm trying to get back on my strict diet so I can continue the meds.



Good news is that I had hot flashes for a few months but they have mellowed out since acupuncture (through the hospital!) I went from waking up in a crazy sweat to almost nothing within 3 weeks!



Bad news is that I now have osteopenia. I was told by my oncologist that I can take calcium so I'm trying this stuff called Grow Bone by Garden of Life. Yeah, not a creative name, but I hear it's amazing from friends and the reviews are good.



Positive. Positive. We will all get through this and be better for it.



Ps. I get my areola tattoo Friday!!! Still deciding whether or not I want a nipple. I have one - maybe that's enough.

I am a 41 year old who had a lumpectomy, chemo and rads last year. I have been on Tamoxifin for 8 months now. I have had minimal side effects, and those I have had could very easily be lingering chemo side effects. Really, for me it is just like taking the pill.

Have I put on weight? I have. But if I'm honest with myself...it's more about having the second helpings and not being engaged in a marathon training program that are the culprits.

I hope you fare as well or better; my advice is to be gentle with yourself, move your body every day, and don't get too hung up on other women's experiences as yours will be unique. Good luck!

Tamoxifen has been bearable for me. I'm taking it as treatment, not as preventive.

The first couple weeks weren't great. I eased into taking it with a half pill. I have occasional hot "flushes" -- nothing like the horrible hot "flashes" I had on Lupron. Compared to Aromasin and Faslodex, the Tamox side effects are easier. The lack of joint pain is fantastic. I can't run far because of lung and bone cancer, but exercise feels great, thank heavens.

If anyone reading this is about to start, my advice is to give your body a few weeks to adjust. My side effects improved over time. I had severe dry eyes for a couple days and freaked out but that problem is gone. I definitely think it affected my vision as I went off of it for two weeks and my vision improved. When I'm on it I have to use reading glasses but off it I don't. I And I lost weight, rather than gained. My appetite is low. I eat healthy but I also don't deny myself dessert -- ever. Sometimes I have two!

Lksher, sounds like you have some different things going on since you posted this and I wish you luck, hope it's all going well!

I thought, though, that I should post in case other women are looking here and thinking about tamoxifen. I've been on tamoxifen since January and the only side effect I've had has been continuation of the hot flashes--those started with my chemo (and chemopause) about a 6 mo before I started the tamox. But, they do seem to be letting up a bit, which is nice.

I haven't gained weight and so far my skin looks really good. Like Pajim, my skin used to be oily and I still had occasional breakouts before--now it's so much smoother and nicer! For that I'm thankful! Also no headaches or serious joint issues (my ankles hurt occasionally, but not majorly and I couldn't for sure say it isn't from activity instead of tamox).

I think that reading the boards here can make you think the horrible reactions to it are far more common than they really are, just because people are less likely to post if things are great and more likely when something isn't and they're looking for answers.

And honestly, for me as a stage IIIa and grade 3, I'm not in a position to give it up lightly. I'm grateful that the side effects are minimal, but it would take an awful lot to make me stop taking it because of how much better my odds are with it than without it.