Considering going Off Tamoxifen

lindaj55

I apologize if this had been discussed before - I don't get here often! It's great to know I am not alone.... just a little background and then I have a question... I am 59 yrs young, diagnosed with DCIS Stage0 in October 2013. Had 3 surgeries. Then 6 weeks of radiation. I've been on Tamoxifen since February 2014. My brain is so foggy that I decided to quit my job last year. My hair is falling out, swollen feet and hands, weight gain, crazy headaches, brain fog, depression, etc etc etc.... Every time I go see my onc she looks at me and says "So you're going to stay on it RIGHT?" I come from a family of doctors (but not me) and I have been trained my whole life to do everything the medical community says without question. So my question to all of you is..... Have you considered stopping Tamoxifen and if you did what happened?? Will my onc still support me? I am afraid that if the cancer comes back I will not get the same level of care because of going against them (stopping tamoxifen) Sorry for the long post. I am depressed and overwhelmed feeling like I will never be myself again..... TIA!

MelissaDallas

If you are 59 why are you on Tamoxifen & not an aromatase inhibitor

lindaj55

Good question..... I asked the onc last year and she said it was because I had already had in the past some bone loss due to parathyroid disease and there are heart issues in my family. that was her reasoning for using Tamoxifen instead. She said that aromatase inhibitors side effects were heart issues and bone loss.... I'm so confused now. I see her on 4/16 .

micronancy

Linda, I also took Tamoxifen post menopause because of osteoporosis. After a couple months, I got the first migraine aura of my life, then several more. Took myself off Tamoxifen. My MO wasn't pleased, since I hadn't had radiation, but she respected my decision. No problems so far, but I'm only 2 years out.

NatsFan

Linda - I was on an AI, but was close to quitting it because of the s/e. My onc understood, and suggested as an alternative to quitting altogether, that I could take a one-month "vacation" from my AI, so that's what I did. Within a week or so of stopping the AI, the s/e began to recede, and by the end of the month, I felt pretty normal. The good thing is that when I started back up on the AI, the s/e remained mild for quite some time. It's like going off of it rebooted everything, and it took a long time for my body to work back up to the same level of negative s/e. Eventually, after a year or so, they were bad again, and I approached my onc about another "vacation." All in all, I ended up taking 4 one-month "vacations" during my 5 years on an AI. I never would have been able to get through my 5 years without those vacations.

Talk with your onc about exactly what benefit you're getting from tamox, then weigh that against your QOL issues. At a minimum, going off it temporarily may give you the break you need to clear the fog and plan your next course of action. During that time you can weigh whether the benefit you're getting from tamox is worth the severe QOL issues you're having. You can then resume it after a month, and if the s/e get bad again, then you can make your decision whether to stick with it, take another "vacation" or go off entirely. Your onc can be an invaluable source of advice, but the bottom line is that this is YOUR decision, not your onc's.

I think one reason my onc was so reasonable is that she is a b/c survivor, and did her 5 years of tamox herself, so she truly understood about the QOL issues. She admitted to me that she also took a few one-month vacations while she was on tamox, and that's the only thing that got her through it. Obviously taking it 5 years non-stop is best, but taking a month vacation here and there and staying on it most of the time is certainly better than going off entirely.

lindaj55

Thank Nancy.... I did have radiation.... that was a trip.... I am so confused as to what to do. The headaches are getting worse, and also, I cannot sleep without a fan blowing on my face!! So many hot flashes. I have only been married (this time around lol) for 4 years and I had what all this is doing to my relationship with hubby. He is so very understanding but I am definitely not the person he married!! I guess I am leaning towards stopping. But old habits die hard and my urge to please the "experts" takes over and I feel like faltering on my decision. I know I need to put on my big girl panties and do what is right for me.... I'm just afraid as we all are thet the bc will come back....

lindaj55

Thanks NatsFan I do like the idea of a break!!

SelenaWolf

I know that there has been some discussion on previous threads about the brand of tamoxifen (i.e., there are different manufacturers) and how different brands can have more side effects than others. Find out the brand that you are on and see if there is another brand that you can try to see if you still have the same problems.

micronancy

Mine was totally a QOL decision. Migraine auras without headache increase the risk of stroke in women, and since Tamoxifen carries a slight risk of stroke and I already had afib, I decided I'd rather risk a recurrence in my 70's than possibly be debilitated by a stroke. I agree with Natsfan that it's entirely your decision. Having worked in the medical field all my life, pleasing the experts never entered my thoughts. Spent too much time arguing with them over the years LOL.