Lower dose of Tamoxifen?

MarieTherese · June 2020

Hi All

I apologize if there is already a thread on this- could not find the search function.

I am trying a lower dose of Tamoxifen as per the recommendation of my MO. Anyone done this? I am seeing some new research supporting a low dose to prevent recurrence in women with certain types of BC (DCIS) or high risk categories. I do not fall into any of those categories, but my side effects after 3 years were unbearable.

PandoraX · June 2020

Curious how it's going for you. I posted the same question before I realized there was a search function on the boards. I want to try it but my nurse oncologist said there's "no such thing" as a low dose prescription right now and wanted me to start with 20mg. Having read about the side effects, I can't even stomach that idea. If I had a more risky condition, it would probably be different. Are you breaking the pills in half and taking them every other day?

MarieTherese · June 2020

Hi-

I have a prescription for 10mg. I tried 20mg for 3 years and really suffered. They initially told me that the 10 mg didn’t exist either, so maybe it’s new?

So far I have taken 10 mg ( it comes in 10 mg pills) every other day for the past 2 weeks and I still feel the effects, but am going to try and keep going. I am not sure what, if any benefit, I am getting. New studies suggest that lower doses can be effective for DCIS prevention so who knows. ( I had IDC)

It’s a tough decision. I had no quality of life and was developing other problems like higher BP, weight gain, lack of activity, cysts, constant pain. I still am not sure if I can go back to 20 mg which is, of course, the goal.

Best of luck-

beeline · June 2020

I took 10mg a day for more than 6 months with my MO’s blessing. Initially I just broke the 20’s in half, but then got a prescription for 10mg. The pharmacy said they didn’t exist, but I insisted and it turned out they could order it but no one had ever done it!

It definitely made a difference for my SE’s — migraines, constant hot flashes, insomnia. Eventually I was able to go back up to 20mg but I could have stayed on 10 if I really needed to.

molliefish · June 2020

admitting that I take one half of a 20 mg tablet every second day so 10 mgs every other day. I got the MO blessing to drop to 10mg a day in June 2019, but had such horrible hair loss that I went rogue and dropped the dosage in half again in the Winterspring of 2020. My hair finally stopped falling out in small handfuls on 21 March 2020. Weird right??? I still get cramps, still get a hot flash daily at around 330 - 0400 am and my skin is desert dry. There is no end to side effects until you are done tx which I will be in January 2021, but they aren’t nearly as Bad or pronounced as they once were. Best wishes and a big fat virtual hug too!

Ileepak · June 2020

I just spoke with my medical oncologist this week. Started taking tamoxifin May 2019 . . . . had all the side effects . . . constipation, muscle pain, dry mouth, hot flashes, tired . . . you name it . . . . I just felt like crap. I was a healthy 52 year old . . . don't smoke or drink . . . try to stay in shape and eat as well as I can . . . boom I get breast cancer . . . . get through all that and started the hormonal therapy "tamoxifen" . . . . I sucked it up . . . then my hair started falling out in droves . . . . I lost it . . . no answers on when or if it would stop and who knows whether it would come back . . . . so I stopped taking it in September 2019. Finally met with my medical oncologist this week and she wants to start taking 10 mgs. instead of 20 mgs. Since I am premenopausal, there are not too many avenues to go, really none. I really don't think I am going to take it . . . my quality of life versus the % of cancer recurring if I don't take the tamoxifen . . . I am opting for quality of life. Has anyone done any research on rosemary extract . . . a natural herb? I am looking into more holistic forms of treatment . . . and maybe when I hit menopause, there may be other medical options I can look into.

Salamandra · June 2020

Hi Ileepak,

I couldn't tolerate tamoxifen and was able to talk with my oncologist about trying a different SERM, even though it's not FDA approved for recurrence prevention in premenopausal women.

The genetic pattern that makes tamoxifen less effective is more common among women of Asian descent, so there has been a fair amount of Chinese research into alternatives, and they are very supportive of toremifene. Toremifene (Fareston) is approved for treatment of metastatic breast cancer here in the states. My oncologist's mentor said he recommended to the FDA that it be approved for cases like ours, but it hasn't happened yet.

After she agreed to prescribe it to me, her main concern was that my insurance wouldn't cover it because it is much more expensive than tamoxifen. But they did - perhaps because I had an almost year long record of trying and not tolerating different brands and doses of tamoxifen (which might be worth a try for you, if you haven't yet tried different brands, switching them up does work for some folks).

I was concerned that since it was from the same drug class, it might have the same side effects for me, but there's no way to know but to try. It turns out that for me, the side effects of toremifene have been a piece of cake compared to tamoxifen (I've been on it for about 6 months now, so I can't speak to the longer term).

You are closer to natural menopause than I am, so maybe it's a different calculation for you. I was pretty worried about trying ovarian suppression plus AI, and I honestly don't know what I would have done if toremifene hadn't worked out. I might have tried it anyway, or I might have tried going without the extra protection. My oncotype score was pretty low, and chances are I would've been fine at least for the medium term that they can predict (10 years I think). But I have many years left ahead of me I'd like to live without chronic/terminal illness, and I watched my mother die of metastatic breast cancer and I'd prefer not to go the same way.

Every morning when I take my toremifene pill, I feel grateful that I found something I could tolerate to help prevent recurrence.

Anyway, actually for plenty of women, they *can* find a way to tolerate tamoxifen. Going down to a baby dose and working up (either to a full 20mg or to 10mg), splitting the dose between morning and night, and trying different generic brands are all things that I've read about women having success with. So that may very well be worth trying fo you! But it is not true that there are no alternatives for premenopausal women, as long as your doc has an open mind.

Rah2464 · June 2020

I kind of hit my toxicity peak at about 2 years in, not sure if this is common for those of us on Tamoxifen or not. While I had always had side effects, things really kicked up a notch to the point where I wasn't sleeping or functioning. I had an appt already schedule with my MO and she has me trying now 10mg twice a day. Her theory is my peak concentration will be lower on a daily basis (2 10 mg pills 12 hrs apart vs one single 20 mg pill), but my lowest level concentration will still be within dosing guidelines. So far, I have seen some reduction in intensity of side effects. I don't know if this is placebo effect or something else. I will try this path for a while and see how it goes. I still am unable to switch to an AI because I have to be demonstrably 2 years out from menopause and not quite there yet.

Salamandra thanks again for reminding us all about Toremifine, that will go on my discussion list.

MarieTherese · June 2020

I started having leg pain after about 18 months of tamoxifen. It got worse and worse and I ended up walking with a cane and feeling just miserable.They tested and scanned me for everything and I must have seen 8 doctors. I did PT, acupuncture, yoga, energy work. I had been very active and strong up until then and was so discouraged that I could no longer exercise. The MO just kept saying that I would feel better if I could exercise, but I really couldn’t move. She didn’t believe me and I think just blamed me for the problems I was having. ( or at least it felt that way)
I stuck it out for another year and a half and just couldn’t do it anymore. There is an Italian or Swedish study that talks about a 2 year benefit from Tamoxifen. It’s not as beneficial as 5 years, but still provides a benefit.

Thanks to everyone who replied. Be well

Ileepak · July 2020

Thank you all for sharing your experiences. Thank you Salamandra for you informative post and for discussing Toremifine . . . I will discuss that with my MO as well. And Marie Theresa . . . you hung in longer than I. It was very difficult for me to function with all the side effects . . . I have always been healthy and active and it took all that away from me as well.

MarieTherese · July 2020

llepak - it sounds like your experience with Tamoxifen was a real nightmare. You asked about herbs and the only thing I know of is a supplement called DIM. It’s worth researching. It is a natural estrogen blocker that is derived from the compound in cruciferous vegetables such as broccoli and cauliflower.

There have been some really interesting studies on it from reputable sources. An internet search for DIM supplement will get you lots of results.

Best of luck and be well -

MT

Ileepak · July 2020

Thank you so much MarieTheresa! I will look into that! What have you heard about Rosemary extract?

Lower dose of Tamoxifen?

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