Tamoxifen Troubles anyone?

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sugarmaple
sugarmaple Member Posts: 55
edited January 2019 in Hormonal Therapy - Before, During, and After

Hi gang!

I just started tamoxifen-20mg a day on 12/10/18. Lucky for me-I've never really had any trouble with headaches in my life-until this week.

I've had a headache come and go every day, kind of like in waves. And this AM, I woke up with a SUPER stiff neck-it hurts to turn it left/right.

I've had a few other SE's also—waking up around 3AM—the hot flash/sweat thing. Boo I'm generally fit and healthy, rarely do I have 'body aches'. This is all so weird!

Is there anyone else that’s having some side effects going on? Good luck to all of us on this journey.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited December 2018

    Hi SugarMaple -- Sorry you're going through this. You're not alone. Aches and pains seem to be a very common thread, unfortunately.

    If you do a search about Tamoxifen here on BCO, you'll find many posts. with this concern. I'll link a few that I follow, to get you started. Hope they are helpful!

    Wishing you the best as you start this part of the journey. These decisions are difficult and the road can be challenging. We're here for you. :)


    Bottle O' Tamoxifen

    https://community.breastcancer.org/forum/78/topics/696015?page=1


    Is There Anyone Who Felt Good On Tamoxifen?

    https://community.breastcancer.org/forum/78/topics/867121?page=1


    Tamoxifen absolute vs relative benefit--is it worth it?

    https://community.breastcancer.org/forum/78/topics/853959?page=1


    Hormone Therapy Choices For PreMenopausal Women

    https://community.breastcancer.org/forum/109/topics/865180?page=1#idx_23


    Any Early 40's Declining Tamoxifen? (this is my own thread)

    https://community.breastcancer.org/forum/78/topics/868242?page=3#idx_76


    I did a search for "tamoxifen" in BCO's search bar....here is the link:

    https://community.breastcancer.org/posts/search?utf8=%E2%9C%93&search_builder%5Bkeyword%5D=tamoxifen&search_builder%5Bauthor%5D=&search_builder%5Bsource%5D=&search_builder%5Bdate_range%5D=&commit=Search


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  • sugarmaple
    sugarmaple Member Posts: 55
    edited December 2018

    Wow, thank you Spoonie77! I really appreciate all the links. I see your thread about ‘declining Tamoxifen. I’m in my ‘slightly more than mid 40’s’-and I’m having a bit of a hard time with this estrogen blocker stuff (never liked birth control pills, either).

    I’m glad to know there are lots of us on here that can listen and empathize with each other. Hugs to you!

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  • DanceSmartly
    DanceSmartly Member Posts: 69
    edited December 2018

    Hi sugarmaple:

    I had a headache very similar to what you've described for the first two weeks I was on Tamoxifen. It was miserable; I had no idea that a non-migraine headache could be so wearing; the worst was waking up with the headache. Still. There!

    The good news is that on Day 15, my headache was gone and it hasn't returned, so hopefully you'll experience the same!

    I haven't had any stiff neck issues.

    Dance

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2018

    If you can start with 10mgs and work your way up to 20mgs, the adjustment is much easier. I still take a split dose in the evening, 10mgs at 8 and 10mgs at 11pm. Hang in there, you will get your groove back.

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  • sugarmaple
    sugarmaple Member Posts: 55
    edited December 2018

    Dance-thank you! So, the headache thing is really odd, right? Especially as a person that’s never suffered from them. I talked to a nurse at my oncologist’s office yesterday-and they said “try and keep taking it for two weeks”....But this neck thing! And it hasn’t been a week yet 😬 Wheeee!

    And this morning, the entire back of my neck is stiff, and painful-honestly, I’d describe it as a neck band of cricks...you know when you turn your neck funny sometimes, or wake up with a crick on one side? I can barely move it-I can feel my heartbeat in it-weird, huh?

    Michelle in Cornland...that sounds like a great and reasonable idea! It seems starting all body types on 20 mg, right off the bat, might not be the best for everyone.

    I’m so glad to hear some words of wisdom from you ladies-thank you! We’ve been through so much-sending you all lots of strength and peace


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited December 2018

    I'm almost a month into taking it. I had a few side effects that lasted a couple days each and then subsided. Hopefully the headaches might too? I've been having a few headaches also.

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  • sugarmaple
    sugarmaple Member Posts: 55
    edited December 2018

    Hey Salamandra,

    I’m sorry to hear you’ve been having some headaches. My neck is so sore, I can’t turn it to the right at all-a bit worse today. But I’m still getting out and about. Thanks for the encouragement out there, gals! Have a great weekend

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  • sugarmaple
    sugarmaple Member Posts: 55
    edited December 2018

    Hey gals!

    So, my stiff neck pain came roaring back with a vengeance yesterday. It’s moved into my back also. I actually can’t sit up or get up out of bed/chairs by myself. It’s sharp, excruciating pain. Honestly, I’ve never felt anything like it in my life! And I’ve always thought of myself as having a high tolerance for pain. I gave the Onco nurse a call-and she called me back after talking to the doctor. They said to hold off on the tamoxifen until my new appointment (1/24/19).

    I hope all you ladies are having a peaceful, healing and as close to a pain free ending to 2018 as you can!


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  • Zuliana13
    Zuliana13 Member Posts: 7
    edited January 2019

    Hi all,

    I probably have every listed side effect in the book! Been on Tamox since 25Oct and going to my Oncologist for the first follow-up on Monday. I'm ready to throw in the towel with it. I had excruciating pain from day 1 and it lasted several days. I take an antidepressant - Effexor - which is also prescribed with the Tamox to help with side effects. My doctor increased the dose from 75 to 150. Helped with the pain and the first month was glorious. Since then I have vaginal yeast infections, abdominal cramps, painful joints, neck and back pain, cannot sleep , upset stomach constantly, chest pain, etc etc etc. If I stabilize here, I may learn to deal with it. But if it´s this bad after three months, what happens in a year? 2? So my conversation with the doc on Monday will explore other options. I understand Tamox is the oldest and most proven effective treatment. I believe in the science. But quality of life is also very important. For the first time in a long time, my yoga class was painful and difficult and left me worse off than when I started.

    Lost a ton of weight since my BC journey began - but I'm barely eating now. Solids feel like rocks - impossible to digest. Surviving on loaded smoothies but probably not the best idea.

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

    Hey Zuliana,

    Tamoxifen is not necessarily the most proven effective. It seems like particularly for higher risk cancers, AI+OS (aromatase inhibitor plus ovarian suppression for women who would otherwise be menstruating) is more effective. At any rate, it's definitely not less effective!

    I'm glad you are following up with your MO, and I hope you can find an alternative that works well for you!

    Be careful getting off of the effexor. THAT process can have truly awful side effects. Make sure you follow your doc's instructions.

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