Just staring at the bottle of T....

beach2beach
beach2beach Member Posts: 996
edited September 2017 in Hormonal Therapy - Before, During, and After

My bottle of Tamoxifen just arrived from my mail order pharmacy yesterday in it's inconspicuous brown pharmacy bottle accompanied by its 2 double sided pages of uses and side effects. I'm more afraid of starting that than I was of having the mastectomy. It's sitting on my night table and stares back at me when I walk into the room.

That's going to have to be some big breath I take when I pop open the top and take the first one. Who would think something that may help prevent a recurrence can cause such anguish about taking. You would think I would have grabbed the bottle and threw one back immediately.

I'm going to have to keep calm and kick ass and take it tonight,

For anyone else just starting also guess it's like the Nike slogan, Just Do It!


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Comments

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

    You can also ask the doctor for 10mgs, twice per day to get started. Easing into a therapeutic dose, I have found, is easier on the body.

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2017

    I find it helpful to intentionally take my tamoxifen rather than hiding it among my other medications and supplements. This reminds me to say "Thank you, tamoxifen," which if nothing else, makes me laugh. At its best, though, it reminds me that the reason that I put up with some side effects from tamoxifen is because it is doing me a service.

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  • Beachmama
    Beachmama Member Posts: 42
    edited September 2017

    Hi beach2beach!

    I just started mine last week. I was super afraid of taking this drug! I was all set to refuse, but my MO was great and said just give it a try, and if you don't like it, you can stop. I'm in their grey area of needing it. I'm not really sure when the 3 pages of scary side effects kick in, but so far my week has been pretty normal. I hope your experience is just as boring!

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  • illimae
    illimae Member Posts: 5,710
    edited September 2017

    I was freaked out too! Based on the possible side effects, I decided to start it at night (so I might sleep through SE's) and while I was still home recovering from surgery. I've only noticed two side effects so far, night sweats (got up, ate popcicle, went back to bed) but it only lasted a few weeks and may have been made worse by summer in Texas. The other SE is stiff finger joints and is ongoing, my pinky fingers sort of snap open in the morning, it gets better after a few minutes of being up and moving and my MO suggested a Glucosomine supplement to help. All in all, both are pretty minor, I hope you have it easy too :)

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

    I'm on the 10 year plan, almost to year 6, and having no problems. Fear is your enemy!

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited September 2017

    No issues that I can totally determine with Tamoxifen. Have taken for 4 months or so. Just give it a try.

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

    I'm with you! I was SO dragging my feet starting this medicine! I was actually better about the chemo. I guess this felt like more of a choice.

    I keep reminding myself that those who are hormone negative would probably love to have the option to take something to help protect them. And - most people who post do so because they've had problems and are seeking help.

    So - with fear and trepidation - I started it yesterday. I figure that with everything else I've been through, how bad can it be? If it's terrible, I'll quit. Or do something else. Or - my MO's favorite - take some other thing to counter the SE's!


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  • YazMar74
    YazMar74 Member Posts: 21
    edited September 2017

    I too was scared to take it, and like Pupmom said fear is the enemy here. I take the full 20mg and I take it at night. I have crazy vivid dreams - but nothing else besides a lil nauseus (could have been something I ate too) the only scary thing was that I had one of those vivid dreams that I was dizzy and I don't know if I actually was dizzy or just a dream that felt so real that I was dizzy.

    I don't have great appetite either and that is not my norm, and I do notice when I take it I soon get start feeling noticibly tired. So taking it at night is a plus for me. I think aside from that - I'm happy with that - but in the back of my mind I wonder if its really working.

    Best wishes throught this journey ladies ;-)

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2017

    Side effects aren't correlated with effectiveness.

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  • Siciliana
    Siciliana Member Posts: 127
    edited September 2017

    Three months on Tamoxifen and surprisingly few side effects! No hot flashes. So far, so good. I take mine at bedtime.

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  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    Well I started and took the first one yesterday morning. Figured I would remember it easier that way. Not focusing on SE's otherwise I'll be feeling every little thing is a SE..lol.

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

    ksusan - I like your "Thank you, Tamoxifen" - it makes me smile. I think of that every morning when I take that pill!

    beach - Good for you! I'm right there with you.


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  • ShockedAt48
    ShockedAt48 Member Posts: 138
    edited September 2017

    I started my tamoxifen a week ago and so far no side effects

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited September 2017

    I started last week and honestly, I feel better than I have in months! I don't know how long it takes for the SE to begin, but so far no problems. I take mine right before bed to avoid the nausea I've heard about. Good luck

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  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    Well week 2 and can't remark on anything that I can't point to this dang weather. This low pressure system from Jose/Maria or whomever is looming is making me feel like i'm carrying bricks attached to my arms and legs.



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  • ML1209
    ML1209 Member Posts: 241
    edited September 2017

    4 weeks in now and so far so good. Biggest issue is insomnia. My BSO suggested Serrenol - bee pollen from a swedish flower. It seems to really helping. I started taking at night, but have now switched to mornings to see if that helps with sleep issue also. A few hot flashes, but NOTHING like when I was doing chemo.

    Prayers and hugs all around!!

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

    So it looks like my only real complaint is muscle cramps or spasms. The second night after I started it, I was up so many times with multiple muscles cramping in my legs. My legs hurt where the muscle spasms had happened for a couple of days. Of course - I had gone on this horrendous 4 mile hike that day so I thought that was the problem. But no - I'm still getting them and not just in my legs. Sometimes I get a muscle in my abdomen that will spasm so hard that it sticks out!

    I'm prone to leg cramps and have had them frequently in the past, like during pregnancy or after lots of exercise. And I'm already taking extra Calcium and Magnesium as well as a multivitamin and an extra B complex so I don't think it's a deficiency or something. I'm trying to remember to stretch my muscles before bed, but I can't do anything about the abdominal ones that happen if I sneeze!


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

    Hey, Brave girl, try putting a bar of soap, dry of course, on your leg. I had the same thing with muscle cramps after 5 miles per day of walking, and I did a little digging, and found that bar soap, can help the distressed area. I have slept with a bar of soap on my leg, at times. Just tucked it under the bottom of my leggings.

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  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    3 weeks and I'm as tired and achy now as I was before I started so I guess no side effects yet lol. Had baseline ultrasound to measure thickness done at gyn today just in case anything happens during the Tamoxifen years. Hope everyone else is doing well still too.

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  • ShockedAt48
    ShockedAt48 Member Posts: 138
    edited September 2017

    beachtobeach:

    I'm almost three weeks out and don't have much side effects. My eyes feel a little dry and I have slight constipation. Sometimes I feel more achy than normal after exercise but don't know if that's my imagination playing tricks. Nobody mentioned having a baseline ultrasound. I have a checkup soon and will ask about that.

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

    I specifically asked both my MO and OB/GYN about a baseline sono and was told that it is no longer done. Basically, they just evaluate you if you develop unusual bleeding or spotting at any point. I really wanted it done since I had normal periods until chemo ended them and would like to know that all is well. You can only push so hard, I guess ...

    On another note - the leg cramps are killing me. I'm up repeatedly in the night. Sometimes they last for 5 minutes or more despite any walking (hobbling), massage, cold packs, soap, etc. They're so bad that my calf muscles are routinely left feeling "bruised" for several days at times. I also get muscle spasms in my abdominal muscles with sneezing.I'm trying to hold out until my next appt but this is ridiculous.


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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited September 2017

    I asked about a baseline as well and the said it wasn't necessary. It might get not be "necessary" but it still would be nice to have. I guess we pick and choose our battles. I'll save it for the MRI and ultrasounds that I will want to monitor later. My BS is very good about those though and argues with my insurance company without me even knowing

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited September 2017

    Brave, I'm surprised they said no, it seems like some docs are still doing them. My ob/gyn was willing to schedule me for an ultrasound when I asked whether he does extra screenings or a baseline for patients on Tamoxifen. Besides, what does it matter to them? They're not paying for it! Sorry to hear about the cramps, anything that keeps you up at night makes everything else feel worse. Have you tried taking it a different time of day? Maybe morning if you normally take it at night? I know from reading the boards that some women find some relief from side effects by changing their schedule. Hope it gets better soon

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  • beach2beach
    beach2beach Member Posts: 996
    edited September 2017

    @Notverybrave, have you tried maybe adding magnesium ? Its known to relax muscles.

    I actually called my gyn and spoke to the nurse and asked if it was a good idea to have one. She in turn asked the gyno and he said can't hurt. im sure had I asked my onc who prescribed she would have said only if something strange happens. iAd already had some strange periods prior to bc diagnosis I wouldn't know the difference

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  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited September 2017

    Pickle juice cures the muscle cramps for me...works like a charm.

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  • ksusan
    ksusan Member Posts: 4,505
    edited September 2017

    Try an epsom salt bath once a week. That, and magnesium supplementation, have brought the cramps down significantly for me.

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

    Thanks for the kind suggestions. I'm already taking Magnesium - started it a couple of months ago along with Calcium when dealing with some joint issues and continue on both daily. I've tried increasing my hydration - seems that just makes me get up more often at night to pee and as soon as I move to get up, the cramp will hit. I also try gentle stretches before bed. Both of those things used to help with cramps in pregnancy. This is like a different animal. I take the Tamoxifen in the morning in the hopes of having less problems by nighttime.

    Curious - how much pickle juice? Every night? Or just when you get the cramps? Same with Epsom baths - I get these spasms every night, multiple times so not sure if I'd need to do the bath every night or what.

    Yeah - I was pretty pissed off about no baseline sono. Seems an easy thing to do after everything else that's been done! But apparently this is the more recent way that things are done. Whatever.


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  • Wendiwithani
    Wendiwithani Member Posts: 108
    edited September 2017

    I take a swallow or two every day/every other day. I've never really measured it so I hope that makes sense. :) I pour the pickle juice into a reusable glass bottle with a lid and keep it in the fridge for the sake of convenience.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited September 2017

    My gyno was also cool about ordering the baseline vag. US and I believe one of the MOs I have seen also requested that they be done yearly. So push for them. They are no big deal, btw, if you've never had one.

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited September 2017

    Bananas or anything with potassium is good for cramping, too. ;)

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