What are some side effects of tamoxifen?

Tamoxifen!
You should type in the name Tamoxifen on your computer!
You will get a lot of information from there all about the drug!
Don't be afraid of what you read, the side affects don't apply to everyone, but you should be aware of them!

ohilly said:

website
If you go to www.askapatient.com and type in the name of the drug you're taking, you will see many posts about the side effects.

I am on Femara and have had hair thinning and insomnia. My oncologist told me none of this...but maybe it's my fault for not asking.

Best of luck,

Ohilly

chemocare.com
My onc. doesn't tell me much except the stage that it is agressive and that we are pulling out all guns. That usually women my age do fine....and then she answers my questions. I ask about any drug, and any other concerns i have. But i do the research first. In fact my chemo Nr. gave me printouts of the drugs i would be on from chemocare.com and had me go home and read them. Most of what i know is from my own research and this amazing board of our sisters. Who not only answer our questions, but also tell their own experiences of ways to help deal with the problem at hand. This really has been a blessing to me.

Love and hugs
Jackie

This November will be 3
This November will be 3 years that I have been taking Tamoxifen. I have hot flashes but I had them during chemo too. Since starting the tamoxifen I notice I get leg cramps at night. I also have gained about 7-8 pounds, can't sleep and am tired. I have read that others on this drug get leg cramps but I just assumed that the weight gain, trouble sleeping and fatigue was caused by anxiety or the residual effects of treatment but now I wonder if it could be the tamox. hmmmmm......

phoenixrising said:

Hi Noel, I was on Tamoxifen
Hi Noel, I was on Tamoxifen for about 1 1/2yrs off and on. I had lots of se and some really bad. I had to go off it. Don't let this scare you as I think it's not the norm. One thing you might think about is having your genes tested to see if you metabolize Tamoxifen. I don't know if you've heard of this before but the recommendation from the Mayo Clinic is that all women starting Tamoxifen should be tested to prevent wasting 5 yrs taking a drug that is doing nothing for you. Not all oncs agree of course. It's been a rule of thumb that if you suffer se then it's presumed to be working. However, there are many poor metabolizers (who have a significant increase in recurrence) who experienced severe se's. As it turned out I am an intermediate metabolizer which means I have an either non-functional or faulty gene and one healthy gene. You can find out more about this if you like at www.healthanddna.com or www.dnadirect.com and of course, the Mayo Clinic.

best of luck to you
love
jan

metabolize
My doc drew blood for the testing when she handed me the script. I got a call about a week later with the go ahead because I do have the enzymes or whatever to metabolize it. I haven't started yet because we agred that I would wait until after rads.

Maureen

tamoxifen
I noticed side effects from tamoxifen when I was on it for 2 1/2 years starting in 2002, but none of them made me feel all that bad. It definately affected my periods, causing some stubborn ovarian cysts, but having a period once every 2 months instead of once a month wasn't so bad until the gyn got worried and wanted an operation for ovarian cancer. Nope, there was no oc, just tamoxifen side effects fortunately. I had a few hot flashes, but nothing to complain about. Later I read that women who DON'T have hot flashes on tamoxifen may not be getting the benefits. They did not have a test to see if you can metabolize T. back in 2002 that I knew about. They do now. Ask your doctor for the test.

Folks rarely mention the good side effects of tamoxifen. Did you know that weight lifters use tamoxifen as a street drug to reduce body fat? I looked this up after my surgeon enlightened me and found he was right. That was a bummer because I wanted an excuse for the weight gain. I went on a diet afterward and lose 15 pounds (that I have now gained back and need to lose again!!!) Tamoxifen also lowered my bad cholesterol and raised my good cholesterol significantly. I think I read somewhere that Tamoxifen was first "invented" as a fertility drug, so be careful about birth control even if your periods stop cold.

Good luck!

C. Abbott

DebCornwall said:

Tamoxifen
Hi, Noel. I took tamoxifen for 5 years. I had a wild dizzy spell for about 15 minutes on the third day, and then never again. I just laid down and it went away, never to return. Fortunately I was home at the time. I did have hot flashes (I was 55 and had never before had hot flashes), but 10 mg of Paxil morning and night got them under control. (The doctor prescribed 20 mg split in half because it was the cheapest way to do it.) I had no other side effects and felt good every time I took it because I was confident that it was keeping any further cancer at bay.

After I finished the Tamoxifen course, my oncologist suggested I take Femara, which would reduce my already low risk of recurrence in half. I took it for about 8 months, but I stopped because it raised my cholesterol way high and made me so sleepy that I couldn't stay awake even when interviewing clients. Embarrassing to say the least. So I stopped taking it.

I wish you the best in your trip. If it helps at all, I found that cancer changed my life for the better, despite all of the trauma (and mine was far less than yours, believe me).

Debbie

I haven't started tamoxifen
I haven't started tamoxifen yet..I will after radiation. Thanks to all of you ladies for posting about it. It isn't as scary as I thought it might be. It sounds like the main side effect, if any, is a hot flash. I have never had one, so we will see. Hugs to you all!

tamoxifin
Ive been on it for almost 2 years now and Ive gotten bad leg cramps, hot flashes and I went off of it because of the side effects to my short term memory, I for got things within seconds, I ended up with my menstral cycle for 5 weeks & heavy. I am on them again now and the charlie horses in my calves are again waking me up, and my kids are back to calling me Dory (from finding Nemo) so I just look forward to the 5 years ending. Thats my story. Hope it helps

tami90650 said:

tamoxifin
Ive been on it for almost 2 years now and Ive gotten bad leg cramps, hot flashes and I went off of it because of the side effects to my short term memory, I for got things within seconds, I ended up with my menstral cycle for 5 weeks & heavy. I am on them again now and the charlie horses in my calves are again waking me up, and my kids are back to calling me Dory (from finding Nemo) so I just look forward to the 5 years ending. Thats my story. Hope it helps

Tami, I've also suffered
Tami, I've also suffered from very bad cramps in both my calves. I woke up with a charlie horse one night and it never went away. If I walk too long or too fast, the cramping comes on again and I can't stretch my legs because I'll get a charlie horse. I also have hot flashes, vaginal discharge and weight gain. Hugs, Lili

tasha_111 said:

Tamoxifen
I have been on it now for 9 months......My main problem is remembering to take it every day (Chemo Brain Eh?) I have had virtually no side effects with this.. yes hot flushes at night (Just turn the pillow over) and vaginal discharge is slightly more but not horribly so. No weight gain, no cramps, no anything awful........Go for it (If it is for you) Hugs Jxxxxxxxxxxx Lili.. what is a Charlie Horse? Sorry, I really am Pig Ignorant! LOL

Charlie Horse
Tasha... a Charlie Horse is a leg cramp over here. I think it came from a very old baseball slang term... a pitcher named Charlie used to get terrible leg cramps during the game. He also had a nicname of The Hoss because he was a large guy...so we have Charlie Horse. And no, I am not pulling your leg with this......Cindy

cabbott said:

leg cramps
My son the runner tells me that if he has leg cramps he is short of potassium and needs to eat a banana. I don't know if it will work on leg cramps caused by tamoxifen, but you might call your oncologist on it or give it a try. Also, be careful of pain in the leg that won't go away. Tamoxifen can be associated with blood clots in the leg. I have never had problems with either.

C. Abbott

I had an ultrasound of the
I had an ultrasound of the leg and mri and everything came back normal. Therefore, we are associating it with the tamoxifen since it started 3 months to the day after I started taking it. My girlfriend had it too and her leg cramps went away as soon as she got off the tamoxifen. The only thing that bothers me most is that I can't walk to far or too fast. I was a big walker and am now impeded by this. I am hoping this too shall pass once I'm done with the tamoxifen. Hugs, Lili

PS: My primary care also checked my potassium levels and they came back normal so I am now taking glucosamine and hoping this helps.