Quitting Tamoxifen

Hi gb2115,

What you wrote "I wish someone had warned me that survivorship would be worse than the actual initial treatments" resonated so much with me!!

People act like it's all about the early treatments, but for many of us it's not. It actually felt cathartic when I saw this article (linked through BCO I believe): Hormone therapy has a bigger impact than chemotherapy on quality of life in women with breast cancer (even if technically it's about postmenopausal woman). For me it was fatigue. I just couldn't stay awake longer than about 11 hours per day, and some of that time was pushing it. That is not enough to earn a living and live a life.

Just in case your MO hasn't discussed this with you, here are some of the things that I tried/decided to try before giving up on hormonal therapy:

Things I learned about from these boards had helped other women:

• Changing the timing of tamoxifen dose (half in the am and half at night). Didn't help me though I read that it helped
• Cutting down (premise: temporarily) tamoxifen dose to see if it could help me adjust. I went all the way down to 10mg every other day and it didn't help
• Trying different generic brands of tamoxifen and following the above steps with them. I ended up trying 4-5 different brands and it didn't help.

• medication to counteract the fatigue side effect. I tried higher doses of ritalin (I was already taking some for ADHD) as well as provigil. It barely touched it.

• I was hopeful that liquid tamoxifen might be different enough in chemical formulation that I could tolerate it. It can also be prepared down to a much smaller dose - 3mg - so I thought it might be a better chance I could adapt by starting very low. I bugged my MO about this until she consulted with the cancer center's pharmacists who confirmed it was a possibility. But by then I was so tired of tamoxifen.
• I read about toremifene, which is also in the SERM drug family (like tamoxifen). In the USA it's used for late stage cancer, but it's also used abroad for preventing recurrence. There is more data for it for postmenopausal women, but there were multiple retrospective studies for premenopausal women with very favorable results. My understanding is that it's more popular in Asia, where the genetic variation that (may) inhibit tamoxifen absorption is more common. I did research and found some American articles recommending that it be accepted as an alternative for women who can't take tamoxifen (it cited reasons like the genetic variation and being on wellbutrin. It didn't cite intolerable side effects because I think the world is still in denial that sometimes women are not wusses ). I brought all of this to my MO and she brought it to her seniors. She kept pushing for OS/AI on the basis that there aren't really good large prospective studies on toremifene for recurrence prevention for premenopausal women. But if you look carefully, those studies don't exist on OS/AI for premenopausal women either. There is exactly one study that shows that benefit, it was small, and it also found that the benefit was reduced for overweight premenopausal women (which I was).

I am SUPER impressed that you made it to 5 years with the side effects. I feel like you should get HUGE credit for that!

If toremifene hadn't worked, I think I would've tried liquid tamoxifen and I think I might have tried OS/AI. I've been thinking on it and realized that I think those 30% reduction of distant recurrence rates are somewhat misleading.

My understanding is that we don't know whether we had a surgical cure or not. Some percentage of women had a surgical cure, and for them, the tamoxifen is doing absolutely NOTHING. Their lack of recurrence on tamoxifen is not due to the tamoxifen and they are noise in the study. So that implies for me that for those women who did NOT have a surgical cure, the reduction rate must be higher than 30%. I don't know by how much. That's part of what kept me fighting to tolerate hormonal treatment for so long. But you already made it 5 years!!

Zeke, increased vaginal discharge is a known side effect of Tamoxifen is and not a sign of uterine cancer. If you start having abnormal bleeding, then you need to check with your gyn to screen for uterine cancer. It's still statistically rare for that to happen.

I had discharge for the first two years on Tamoxifen. It has gone away now that I take my pills twice a day, 10 mg each. Its very common but I would continue to be seen by a Gyn and keep them in the loop with symptoms. Most concerning obviously would be bleeding.

Thanks!