Lower dose tamoxifen study

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Anonymous
Anonymous Member Posts: 1,376
edited January 2019 in Hormonal Therapy - Before, During, and After

Although this study (link to breastcancer.org analysis below) shows that a lower dosage of tamoxifen (5mg) is as useful as the standard 20 mg dose for non invasive breast cancer, I would like to ask my oncologist if I can lower my dosage. (I am IDC, 0 nodes, low oncotype score)

I asked about a lower dosage shortly after starting T when I had a lot of side effects. (The hot flashes are still impacting my sleep and my job performance) but my oncologist said that only 20mg had been studied, and less than 20mg a day is not an option.

Given this NEW study, I'm reaching out here to ask:

1) Any of you with INVASIVE cancer have luck getting oncologist to bless a lower dose of T?

2) Any advice on how to talk about this with oncologis to ask about this?

I've had such a hard time on T that I went on effexor, had neuro symptoms to that and had to go off the effexor, which was VERY hard for me and disrupted my life (ended up having to take fullmed holiday from all meds for several weeks ). I've asked my gyn for advice and we tried something natural that hasn't worked, and she says next thing to try is gabapentin. But if a lower dosage of T is effective, and if it would lower my risk for endometrial issues, and keep me off gabapentin, it seems worth asking.

I'm just not sure HOW to ask my oncologist. I feel like she thinks I'm a whine and a weirdo. But honestly I don't know how I can get through another 3 years + of this and still keep my job, which I need to pay the bills.

https://www.breastcancer.org/research-news/low-dos...

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  • pupmom
    pupmom Member Posts: 5,068
    edited January 2019

    Just ask her! That's what they're there for, meaning to help us. Effexor helped my hot flashes to the point that I hardly have them anymore, but we're all different.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    I think the way to frame this is that you're going of of the 20mg tamoxifen, and does she think it's worth trying to see whether a 5mg dose is tolerable for you, or might you just as well quit completely.

    I think there's a good chance she'll come down differently if it's a choice between 20g and 5g than if it's a choice between 0g and 5g

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  • Andraxo
    Andraxo Member Posts: 410
    edited January 2019

    That study isn't even published yet. It's biggest limitation was that it didn't compare 5mg to 10 or 20. There are no studies on the most effective lowest dose, so they go with the only dose that has been studied and published. It is also not true that if you take this 20mg pill that your cancer won't come back. Some people take it and cancer still comes back. Others take nothing and cancer doesn't come back. We need more research but science and research are very sexist (a male friend bio-engineer lectured me about this sexism last weekend) and congress does not allocate enough finds to NIH for breast cancer research. Complain about this to your congresspeople.

    Anyway....I'm on a month-long "holiday" from Tamoxifen. Actually I'm at 5+ weeks now and when see my oncologist this Friday it will be 2 days shy of 6 weeks off it. Not sure when or if I will re-start. Been on it 2.5 years and the last 6-12 months have been awful. As an athlete, my performance was not what I want it to be or feel like on T. My muscles felt terrible/dead, along with progressively worsening knee joint pain, and many mental/brain/mood effects. This break has been fantastic! I didn't realize how much I wasn't feeling like ME anymore mentally until the cloud lifted after 2 weeks off it (takes 2 weeks to get out of the system). My muscles feel great! I have way more energy! I am soooooo much happier! YAY!! I still have knee joint pain, but I think the T aged me very fast and there is permanent damage to my knees (which were otherwise great even a year ago per x-rays and ortho).

    I will NOT be going back on 20mg. My choice. I will consider lower dose to try, or it will be nothing at all. Remember this is a choice you make, no one forces you to take it. Sure there may be consequences (higher risk of recurrence or new cancer), but personally I think I'd be happier living a shorter life I enjoy than a longer one that I don't enjoy. Being active in this beautiful world is what drives me and fulfills me. I want to feel well enough to participate in many sports and do all the things I love to do. Sure I was still doing them on T, but it felt awful and didn't bring me the joy it used to.

    Oh and my cancer was IDC, very ER+/PR+, HER2- B mastectomy, chemo, and rads. I had more cancer in my lymph nodes ( 3 or 4 nodes + and sentinel node had 1cm tumor) than the primary breast tumor which was less than 1cm. Had Mammaprint done, not Oncotype, so I can't say what my onco score was.

    Good luck talking with your MO! I hope it goes well! If he/she considers 10mg, you could always choose to split the pill. I doubt any of them would truly 'bless' a lower dose as you asked (at least not until there is more evidence that is published in a peer reviewed journal), but it's your body, your choice.

    - xo

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2019

    I had a bunch of problems when on Tamoxifen. My MO kind of blew them off and seemed pretty frustrated with me. He's the "do what I say and don't ask too many questions" type. I'd probably switch doctors if there was a better option nearby. Anyway - I brought up taking a lesser dose after reading some older research. He told me that I'd most likely have the same SE's without the benefit of the proven reduction in recurrence. I ended up just quitting it.

    I had always planned to try it again - thinking I'd start at 5 mg and go up slowly. If I had problems then I'd reduce the dose again to the tolerable level. I just haven't been ready while dealing with other health problems.

    I think that some Tamoxifen is probably better than none. And I also believe that a lower dose may be all that is needed. There must be some reason why some people do fine on it and others suffer terribly.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    Definitely talk to your doctor about lowering the dosage or switch to something else. After all it’s your body and your life. You can listen to your doctor’s advice but the ultimate decision is yours.

    I took Arimidex for the first year but I developed osteopenia so my MO switched me to T because Arimidex attacks the bones. Btw I had to tell her I needed to switch. There are doctors with massive egos who think what they say goes but not when we are dealing with a QOL. Had I experienced the SEs you guys have had I would be campaigning to switch meds too.

    I had joint pain and hot flashes with T. They were manageable and I was on the drug 4 years. Luckily I didn’t have to continue on for another 5 years.

    I don’t appreciate doctors being dismissive of our complaints. Whether they think it’s whining or not is not relevant.

    It’s a crap shoot to be sure if you quit taking it. No guarantees either way. One thing for sure though it’s your call just don’t second guess yourself or look back and wonder what if..

    Btw I’m 7 years out last August. So far, so good.

    Diane

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  • Misstic
    Misstic Member Posts: 115
    edited January 2019

    I was on 10 mg per day for 3 years and got a recurrence. I had this low dose because severe neuropathy and unbearable hot flashes. I had previously Taxol chemo and Tamoxifen awoke the neuropathy. My weight is low (50 kg) and I wasn't in menopause even if over 50. This is the reason why my MO considered this low dose was an option. Obviously, it was an error.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2019

    Misstic - I'm really sorry to hear about your recurrence. I can't imagine how disappointing it must be. Scary.

    But I still stick with the "crapshoot" idea. There seem to be no guarantees in any of this. Some do everything and get cancer again. Others do very little and have no problem.

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