Stopped taking tamoxifen

Starlings · July 2017

I have been taking tamoxifen for 6 months and have been miserable. The side effects had become unbearable, and I was on a downward spiral of not being able to do my job, not exercising, poor diet, dehydrated from sweating so much, etc. that I decided last week to not take tamoxifen for 1 or 2 days to see if things improved. Well, they did - so much so that I never want to take it again. Everything is better - my motivation, digestion, mood, you name it.

I haven't told my oncologist yet, or my family. Several months ago, I spoke to my oncologist about the side effects (which were nothing compared to how I was last week), and she said the only option was to suppress my ovaries (I'm pre-menopausal) and switch to an AI. That didn't sound any more appealing, so I stuck with the tamoxifen,

So now I'm stuck. I know my oncologist is going to want me to become "compliant", but if compliance means that my exercise and diet go out the window, is it worth it?? From what I understand, exercise has at least the same effect as tamoxifen, probably much more. And that's just against cancer - I'm also concerned about my weight, heart, blood pressure, etc. And my mother died of a pulmonary embolism at age 48 - I really don't fancy my chances if I resume my compliance with tamoxifen.

I'm also a single mother with an 11 year old daughter - and she's been miserable too. I figure that she needs me more now, and if that means she has me for 10 years now, compared to 10 or more extra years when she's an adult, I think she needs me a lot more right now.

marijen · July 2017

Hopefully over the next few years they will come up with something better. I'm in the same spot I stopped mt letrozole a week and a half ago and already feel better. Once they stopped it for a month when I was having a reaction to radiation. It's ok to stop while you figure it out. There are also natural ways to decrease estrogen, food you eat for one. I'm sure there will be someone with better help. There are several topics already on going off anti hormonals too

Starlings · July 2017

I would so much rather the natural route. I was sick in the past with a lung disorder, and was put on steroids and antibiotics that did no good - only harm. Now I am much more cautious about prescription drugs, I have a list of side effects and drug allergies as long as your arm:(

jenny153 · July 2017

Unfortunately, tamoxifen comes with its side effects but with your type of bc it can prevent recurrence by 30% which, for me personally, is too high to quit taking it. Maybe speak to your consultant again and do through all the options available to you.

gb2115 · July 2017

Something to discuss with your onc is risk of recurrence without it. I don't know...for me having a small child that I would like to see grow up, I would put up with a lot but my kid is a lot younger. Maybe the AI would work well for you... something to talk with the doc about. I work closely with patients who could be considered "noncompliant" (a word we try not to use) and trust me, fear of being labeled as such should not keep you from telling your doc you stopped the med. We always want to know what is really going on because there is often some way to help.

dtad · July 2017

Hi Starlings...So sorry you are having so many SEs from Tamoxifen. Its a really hard decision when it affects your QOL so much. I don't think there will be any other treatment options until we start speaking up! That should start with telling your MO you are not taking it. Find another doc if you feel you can't discuss it or work with him/her. IMO the compliance rate is much lower than reported because of situations like yours. We deserve better!

Starlings · July 2017

So, my oncologist said to stay off the tamoxifen for a month until it's out of my system, then we'll review my options. Said she had a feeling that this would happen. I'm guessing lupron will be the next step?

exercise_guru · July 2017

starlings I am curios what brand of tamoxifen you are taking. You might want to try a different brand. Many women here do better on TEVS brand . That was not the case for me at all. I had pretty horrible side effects and then switched to MYLSN brand and it was significantly better. Still have hot flashes but not much else and my mood swings depression etc are gone. It's something you might want to consider before giving up.

dtad · July 2017

Hi again Starlings...just want you to know I refused anti hormones from the start for several reasons. I do multiple things to lower my estrogen naturally. Please feel free to PM me if you would like to discuss further. Good luck to all.

BucsGirl · July 2017

Hi Starlings,

I totally get your frustration with Tamoxifen. I have the same horrible side effects. I'm taking the TEVA manufactured one. I've seen conversations in this forum regarding the switch of manufacturers (as exercise_guru stated). That sounds like a good option. It looks like dtad also found a different way through alternative methods.

I just need to say this. It's something my MO told me. I've also read the research on this. The hot flashes mean that the course of treatment is working for you. It's removing the Estrogen (as it should). It's the best indicator that you're going to have less of a chance of reoccurrence in the future. I know this is an old article, but I think there is a lot of truth to this theory.

Hot Flashes Good News For Breast Cancer Survivors

Then again, it is ultimately your decision and I think you've already made it. You've got to do what is comfortable for you.

Artista928 · July 2017

Not everyone with low estrogen gets hot flashes. My 73 year old mother doesn't get heated up and she's 21 years into menopause. The only indicator is if you don't recur. It doesn't take a lot of estrogen to recur and nothing removes it entirely....

Starlings · July 2017

I'm not sure which brand it was, but I've had 2 different brands over 6 months. The first gave me terrible joint pains. I had no pain with the second brand, but could not function mentally. As for hot flashes - I didn't have anything resembling a hot flash - I was hot 100% of the time. Now that I've stopped taking it, I'm beginning to have "cool flashes" where I sometimes feel normal. I was wearing summer clothes in the depths of winter and getting odd looks from strangers. Once summer arrived, all I could do was lie down in an air conditioned room. I couldn't exercise, couldn't do my job. I figure that exercise is at least as beneficial as tamoxifen, so if I can resume my normal activities again, then that's a better alternative for me. I'll wait an see what my MO has to say, but I may decline whatever she offers and try more natural alternatives.

BucsGirl · July 2017

Oh wow. I didn't realize you were hot 100% of the time. I thought it was the typical hot flashes & night sweats. I get hot and then cold at all hours of the night. I'm either putting the blanket on or throwing it off. I also don't have the joint pain you experienced with the other brand. I'm sorry you're going through all of this. Scared

MexicoHeather · July 2017

Thanks for the update and speaking up. I am scheduling the oophorectomy next week. I am getting SEs and Quality of life is important.

farmerlucy · July 2017

Interesting article re: Hot Flashes. FWIW Lilly Shockley runs the "Ask the Expert" breast cancer page at Johns Hopkins. I have used it a couple of times. She is very helpful. Good luck with the ooph MH. I had one two years ago. Surgery was easy. Instant menopause, not so much.

Stopped taking tamoxifen

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