Has anyone on here NOT had side effects while taking Tamoxifen?

aprildawn714

Like everyone else I am concerned about taking this drug. I have not started yet. I already have thin hair and I am tired from my migraine meds. I usually tolerate meds and don't get the side effects that I read about but this one sounds scary

DorothyB

Welcome - I just started taking tamoxifen on Aug 1st. I also have thin hair already. However, I do need to take this to help prevent recurrence. Check out this thread: https://community.breastcancer.org/forum/78/topics/867121?page=1

mom2bunky

right there with you. I start Wednesday. I saw a thread recently about this. Several women responded that they were good on it. Fingers crossed for both of us.

AliceBastable

I started around January 1st this year. I had some side effects, like mild hot flashes and leg cramps. The worst of it lasted just a month or so. But I quit in April due to horrible mood changes. Unlike the other SEs, that didn't go away, so after a month, I restarted the pills. Not much in the way of hot flashes or cramps after a couple months, but I still have the Jekyll and Hyde personality problem. It really sucks, but I don't think I can blame the Tamoxifen.

aprildawn714

Thank you so much for the reply! It makes me feel better to read some better reviews about this medication. I am pretty good about meds. I usually don't get the side effects maybe some tiredness. I work hard to eat healthy and exercise and stay in shape and I see a lot of people say they gain a ton of wait. That is depressing. Along with hair loss and blood clots and heart problems and moods swings..... I know I shouldn't read reviews because it makes it worse but I always research and want to know about the meds I will be taking. I haven't had my surgery yet. This is the medication my Dr told me I will have to take.

aprildawn714

Good luck to you too!

aprildawn714

thank you for your reply. I hope you find a medication that works better for you

Partyoffive

aprildawn:I have been on tamoxifen for over 6 years and can honestly say I have had no serious side effects besides some muscle cramping and intermittent hot flashes nothing that I can’t tolerate. I had heard horror stories and was more afraid ignored Tamoxifen then chemo but for me its been a very easy med for me and I feel great. Good luck!

Kristi

Moderators

Welcome, Aprildawn714!

We're glad you've joined our community, and hope you find this to be a place of support! As you can already see, there's lots of information and conversations happening about Tamoxifen here. We do want to emphasis that everyone's experience will be different, but we know how helpful it can be to hear from others - the good and the bad!

The Mods

rubyredslippers

How could you ever know what's happening inside your uterus whilst taking this? ARe there side effects prior to getting the fatal endometrial cancer?

Veeder14

Hi rubyredslippers,

Due to my BRAC2 mutation, I was being monitored quarterly for ovarian/uterine cancer by having transvaginal ultrasounds/ultrasounds before starting Tamoxifen. These show your insides-ovaries, uterus, etc.,to check for malignancies. During my last ultrasound it showed my uterine lining to be 17 mm (2mm when I started Tamoxifen) after only 4 months on Tamoxifen. I wasn't told that Tamoxifen actually gives estrogen to some tissues like the uterus while blocking estrogen from breast tissues. Since having a thick uterine lining is a cancer risk and taking the medication would probably continue to grow it, I ended up having a hysterectomy to get rid of that problem.

You would need to be monitored somehow to check on possible developing endometrial cancer. I was also getting periodic tumor marker blood tests and the numbers were increasing indicating a problem.

AliceBastable

Rubyredslippers, where the heck do you get the idea that endometrial cancer is fatal? Good grief, it would have to be there for quite some time and spread to the uterus and other organs to be fatal. I've had endometrial cancer and I'm very much alive. Scaremongering does not help anyone make a sensible, fact-based decision.

WC3

I had depression and emotional lability, as well as a PMS type heaviness in my lower abdomen for the first few months but all of that has mostly resolved. I've noticed that I get some mild swelling in my foot from time to time, which I used to get before my period. I say foot because I only get it in the left one.

I get hot flashes but that might just be from the chemopause.

All in all, I don't feel horrible on it, but my endometrium has thickened from it and I do worry about endometrial cancer.

edwards750

Ovarian cancer is the “fatal” cancer but because by the time it is discovered it is often too late.

I had joint pain and hot flashes with Tamoxifen. Nothing unmanageable but certainly annoying.

Diane

PurpleCat

Hi April, I just posted on another thread that tamoxifen hasn't made my migraines worse and may have actually brought some improvement. I have less trouble with joint/muscle aches, leg cramps, and general malaise when I remember to take my magnesium supplement. It's all better than a recurrence.

DorothyB

I've only been on tamoxifen for 5 days so far so can't comment on side effects much, but the chance of getting endometrial cancer is less than 1%. I'm more concerned about the blood clots and potential eye issues - but it really lowers my chance of recurrence a lot, so am taking it. (not sure if I will get to or stay on full dose)

vlnrph

My first couple years on tamoxifen were fine. A rechallenge after not tolerating aromatase inhibition was much different however. I then took no anti-estrogen therapy due to quality of life issues and became metastatic in 2018. Several months on Faslodex injections are going OK. My night sweats are controlled by gabapentin.

Endometrial concerns will often reveal themselves via abnormal bleeding so that's the thing of which to be aware.

AliceBastable

Edwards750, my grandmother died of uterine cancer (I don't think anyone dies of just endometrial). It was in 1936, she didn't speak English, and they had no money for a doctor until it was too late. Fast forward to the 21st century. Anyone taking Tamoxifen is under the care of a doctor, so the chance of an endometrial cancer becoming invasive to the point of fatality are miniscule.

aprildawn714

Thank you for your reply Kristi you answered my question. Some on here are bickering and posting things that have nothing to do with what I asked.

Thanks again!

Partyoffive

aprildawn71: just trying to help out with every med there can be side effects and from my experience Tamoxifen has been the easiest one I’ve been on. Pm me if you have any other questions.

Kristi

Siciliana

Aprildawn, I have been on tamoxifen for a little over two years and have had very little in the way of side effects. No hot flashes at all. The only thing i have experienced is vaginal discharge, and I think my hair may be a little thinner. But not sure if the tamoxifen is causing it or if it would have happened anyway. I feel pretty good on tamoxifen.

aprildawn714

Thank you! Hearing more positive things is def making me feel better

Mymomsgirl

April I've been on Tamoxifen for almost 5 months and have done well. I get a few warm flashes usually when my blood pressure goes up. I did go the route of 10 mg in the morning and 10 mg in the evening, when I took it all at once the hot flashes were a little worse. I also am losing a little bit hair but it is not coming out in clumps, just a few strands getting ready in the morning. Here's to a SE free journey for you.

bearcub

It will be 7 years on tamoxifen for me in December. The only symptoms I have noticed is in the last 6 months my hair is thinning. I am not sure if it’s from tamoxifen or just aging, I am 62 this month.

Elephant

Aprildawn, I have been on Tamoxifen since April and to date have had so side effects at all.