How do you Coexist with Tamoxifen SE?

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sm627
sm627 Member Posts: 298
edited October 2017 in Hormonal Therapy - Before, During, and After

Hello Tamoxifen Sisters,

My name is Sara and I am 33. I just started taking Tamoxifen about 2 weeks ago and I am looking for advice/experiences you have had on how to minimize the Side Effects you have had?

So far the only SE I have had are cramps, feeling very tired and my head feels like it has been in a haze like state that lasts most of the day. I get about 4 hours in the evening when my head feels clear and I have a bit more energy. I am wondering if feeling tired is something that will go away with time or will last long term? I am a preschool teacher so my "Children's" high energy and my low are not playing very well together.

How long have you waited before calling your MO and are there any other SE I should be getting ready to look forward too?

I keep on trying to tell my body that Tamoxifen is going to be it's best friend for the next 5 years but they both don't seem to be hitting it off that well. I hope they can work it out soon.

Thank you for your help I appreciate your guidance and support on this journey.

Hugs to all,

Sara


My story diagnosed on May 30, 2017 with a Borderline Phyllodes Tumor 17cm on the right breast and ADH. I had my mastectomy a month later on June 27.



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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited October 2017

    Split your dose, with your doctor's permission. Ask if you can start with 10mgs at night, for two weeks. After two weeks, add the other 10mgs at 4pm, or take 20mgs at night. I do the split dosing, 2pm/8pm, 10mgs each. I have no major side effects. Walking, lots and lots of walking will help the side effects. Have your vitamin d level checked, and if low try to get on the 50,000 weekly units. Have your iron level check. Make sure everything else going on with your body chemistry is at premium level. It is really important not to shock our systems, and to ease into a new medication. It makes adjustment so much easier. Your body will adjust, incrementally is better, but time seems to work for most.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2017

    I had really bad cramps in my legs that disappeared after 3 weeks. Nothing that I did helped so I think my body just became adjusted or something. Good luck!


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  • sm627
    sm627 Member Posts: 298
    edited October 2017

    Thank you all for sharing your experiences they are very helpful. Michelle, thank you for the wonderful idea about splitting the bill in half and taking it at different times of the day. I will call my MO this week and ask her if I can do that. I will do more walking and see about getting blood work done to make sure everything is okay.

    KB870: It would be nice if they could ease us into taking this powerful drug I hope that happens at some point it sure would make this hormonal therapy life easier to deal with from the get go.

    Notverybrave: I am glad your leg cramp pain went away on its own that gives me hope that some of my issues will resolve themselves too.

    Wishing you all the best and thank you again for all of your help you are my Tamoxifen lifesavers!

    Hugs,

    Sara

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited October 2017

    For the leg cramps, try putting on leggings and place a fresh bar of soap - dove, etc. right on where the leg cramp occurs. Believe it or not, it works. On dose splitting or ramping up medication, all you have to do is ask your doctor. Generally, they are willing to work with you towards a long range plan. It does not matter how you start, just that you do start, and that you do get to a therapeutic dose. I actually get hot flashes around the time I am supposed to take my Tamoxifen. If I go over, lets stay to 3pm/4pm, and miss 2pm, I start to get hot. I set my phone alarm and time everything for maximum bio availability.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited October 2017

    Sara-

    I know what you mean about the haze, I take mine right before bed and I'm pretty sure it's helping me sleep better. I also seem to have more energy during the day. So far hot flashes haven't been a problem. I'm also getting monthly Lupron injections for ovarian suppression.

    Good Luck to you

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2017

    I tried the "soap trick" out of desperation - did nothing for me. But I did see it mentioned multiple places on the internet.


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  • pupmom
    pupmom Member Posts: 5,068
    edited October 2017

    "Snake oil" is alive and well.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2017

    you may want to go ahead and call the MO to rule out the leg cramp actually being a DVT (blood clot). Especially if the cramping is in one leg. Thought I had cramps too - it was the leg I had surgery on a year earlier and it had been raining so not uncommon and I just chalked it up to thatbut it turned out to be a clot instead.

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  • GaleStorm
    GaleStorm Member Posts: 2
    edited October 2017

    Working out, 5x per week.  Quiet time, alone.  Turkey Tail Mushroom supplements & CBD oil.  

    Mag/Calcium pill, and lots of herbal tea, hot and cold all day.  Green, hibiscus, tulsi.  For muscle cramps. 

    20ML T. in the morning, with coffee. 

    I asked my doctor about splitting the Tamoxifen in half, and she said no :( 

     

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  • sm627
    sm627 Member Posts: 298
    edited October 2017

    Hi Everyone thank you all for writing your advice is very helpful.

    Michelle- I will try the soap trick if or when I get cramps in my leg. Right now what I am experiencing is pelvic cramps they seem to come and go throughout the day for the last few days. Do you have any tips for that? Glad you have developed a time system that works for you to mange the SE better. I haven't gotten hot flashes yet are there any warning signs or do you all of a sudden get hot?

    Cpeachymom- Glad I am not the only one that has a hazy head. I take mine at night too before bed and I must admit I do like how it helps me get sleepy it makes bedtime much easier. If that could last for the next 5 years that would be a nice SE. Hope you don't get any hot flashes. Sorry you have to go through Lupron injections for ovarian suppression. How do getting the monthly injections and taking Tamoxifen impact your SE? How long do you have to get the Luporon for?


    Lula73- Thank you for sharing your story with me. Sorry to hear you ended up with a blood clot how are you doing now?


    Gale storm- Thank you for sharing all that you do to help lessen your SE. I will talk to my MO about what you are using to see if she will let me use them too. What kind of exercises do you do? I am a walker I try to get either 30-60 minutes in each day. Sorry your MO would not let you split the Tamoxifen did she say why you couldn't do it?


    One other question I have for everyone is what do you all like to do for fun? I love to do art projects. Also do any of you have any animals in your home? I have two girl cats named Mia and Heidi they have been my furry therapy through all of my BC issues.

    Thank you all again for your help.

    Hugs and Love to all,

    Sara

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