Ending tamoxifen

Prue1963

I was diagnosis with breast cancer 4/2018 I had lumpectomy nothing in my lymph node stage 1A grade 3 I have try all the different medicine and having a lot of side effects.. Thinking about stopping I am on tamoxifen and the side effects are all bad having a hard time with just moving because of the pain and stiffness

Lady-Bug-4-Me

Your diagnosis (surgery April 2019) sounds very similar to mine and I was told to use tamoxifen also, but decided not to use it because of what I had heard of the side effects so I decided being alive with what time I have left in this life I don't want to be in pill pain so I am taking my chances to live without the tamoxifen and the pain and stiffness, which I have been free from since my surgery almost a year ago.

God Bless You ^j^

jesbeckham

Pure1963 what did you decide? I only took tamoxifen for about two months, which was not long, but long enough. I had severe nausea and dizziness and would almost pass out multiple times a day. I just couldn't tolerate it that well. My oncologist wants me to be on it, but I just couldn't do it. Have you had other medication suggestions? Have other healthcare providers made suggestions? I think I could try what my surgeon suggested, which was taking a lower dosage of the tamoxifen. By looking at studies where patients took a lower dose the tamoxifen seemed to be as effective as the higher, but I still worry I may have really bad side effects. My oncologist wants it to be all or nothing, but not sure if that's the best advice either (since the lower dose studies/patients haven't been followed that long compared to regular dose). What have been your experiences with the medicine and advice from your doctors or others?

flashlight

jesbeckham, You didn't post your BC diagnosis. Tamoxifen can be dehydrating you have to increase your fluid intake. Some have posted going off it for a couple of weeks then restarting at a lower dose and that seemed to help them. It wouldn't hurt to give it a try especially if you are premenopausal. I would ask your MO for a 10mg script, get a pill cutter and work up to 10mg. Good luck to you!

Prue1963

I am post menopausal and have be on all 3 AL medicine and could not take them do the joint muscle pain stiffness and very severe leg cramps so oncologists recommended taxoxifen. But that scared me a little with all the side effects. I have been on it a month now I seem to be ok right now some of my side effect have subsided Not sure what is worst the possible of blood clots uterus thicking or cancer or the chance of breast cancer again both my oncologists and surgeon say take the taxoxifen. It is something I am really have to decided. Would like to follow doctor recommend but I cannot feel like crap all the time

Moderators

Such a difficult and personal decision to weigh all the factors, and side effects. Feel free to take a look at our content on Tamoxifen here.

Prue1963 and jesbeckham, let us know what you decide!

The Mods

Salamandra

I tried really really hard to tolerate tamoxifen but it didn't work out for me. It had an incredibly sedating effect on me, even at very low dose.

After a lot of research and conversation with my oncologist, she agreed for me to try toremifene instead. It is in the same SERM class as tamoxifen. It has a lot of good evidence for postmenopausal women and for metastatic cancer, but few studies for premenopausal women preventing recurrence, and it's not FDA approved for it. But that seemed like enough evidence to me, and after she consulted with her senior oncologist, it was for her also.

Luckily, it has been much better for me than tamoxifen. I'm on my third month now, and if it continues as it has been, it is easy for me to imagine staying on it long term.

I wish that my oncologist had offered it as a suggestion. Her only next step would have been AIs.

Anyway just to say that there actually IS a potential alternative to tamoxifen for premenopausal women out there, in case that is something you/your doctor might consider.

bluesky01

I had a hard time with Tamoxifen for the 1st 6 months, I don't know how I pass those days... I am endure pain well and it is not good thing always I think. After 2 years and 3 months, I was bleeding, and I think it because of the med. I read many research papers, one of them says Tamoxifen 16 times higher risk of Endometrial cancer, some paper says 3 times higher. Especially menopausal woman should be very careful before they make a decision. I saved my breast and now I going to loose my uterus and ovaries and Fallopian tubes. I feel like I should have do more research about different hormone med for my own situation other than just followed doctor's recommendation.