Starting Tamoxifen - Spring 2015

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  • shelleym1
    shelleym1 Member Posts: 298
    edited August 2015

    I started Tamoxifen in June and tapered up my dose for about three weeks. My side effects are most noticeable the week before my period. I still think I'm doing okay so far. As long as the side effects don't last longer than a week I'm okay. I feel like I've gotten a little more achy over the last week or two. Hot flashes still occurring at night but not horrible. I basically just get hot and throw the covers off. Appetite has stayed the same, no change in weight. I think my skin is a little drier. I definitely have more problems with acid indigestion too. Pepcid seems to help. Some days I have no indigestion and some days it's very noticeable.

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited August 2015

    4pink101 ... It's worth asking your Onc. I tapered over the course of about 6weeks and have experienced little, to no SE's (i'm about 4mos in now). Would it have been the same if I took the full dose from the get-go? I'll never know, but in theory, it seems like it would make sense ... at least for the initial SE's. Of course, once it's built up in the system over time, it won't matter what you did during those first few weeks. :-/.


    Michelle110... keep us updated on what your doctors say caused the cysts. With my limited knowledge, I wouldn't suspect Tamoxifen can wreak such havoc on our ovaries that quickly (you said you've been taking it 6mos, right?) and as much as it does suck and I feel for you having to deal with it, I do hope Tamoxifen isn't the culprit. Good luck, regardless. These procedures are never fun. I had a very tight/dull/heavy-like feeling last week in/around my uterus. It lasted about 2-days and had me on high alert. It passed and has not returned. I've had my period 3x's while on Tamox and am due again soon, so I'm wondering if it was my ovaries fighting to work...

    I may have asked this before ... is anyone seeking out a gyno specialist who deals with high-risk patients? I saw my Gyno shortly after chemo/before starting Tamox and she seemed way too unconcerned with my condition and worries.
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  • Piscean
    Piscean Member Posts: 50
    edited August 2015

    4pink101,

    I don't know if you got an answer to your question about starting Tamox slowly, but that is what my MO had me do. One tablet every other day for a month, then up to one a day. We were concerned about mood swings. Unfortunately, I gained 15 pounds in the first few weeks and this is despite a very clean diet, lots of water and vigorous exercise 6 days a week. This makes me weepier than the Tamoxifen!

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  • 4pink101
    4pink101 Member Posts: 45
    edited August 2015

    thanks everyone for your feedback

    I did speak with my MO about a gradual start- he is having me take 1/2 tablet daily for 2 weeks then increase to the full tablet. I was doing ok (had pain around ovaries and pressure); however, yesterday had a horrible headache that did not quit. I hope this isn't a sign of what's to come.

    So thankful to connect with people here-

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  • shelleym1
    shelleym1 Member Posts: 298
    edited August 2015

    Does anyone else have back pain on this stuff? By the end of the day after sitting at my desk all day, my back is killing me! It's not just one spot. It's all over. I'll mention it to my onc next week, but I think it is from Tamoxifen. I'm starting Glucoasmine and Magnesium in hopes that it will help. I don't think my shitty posture is helping matters either. Next weekend I am going for reflexology and a massage. Hoping it helps.

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  • Uniboobie
    Uniboobie Member Posts: 1
    edited August 2015

    I started Tamoxifen on May 1, and had to quit taking it at the end of July. The first two weeks were fine and then I began having severe hot flashes that started mid-evening and lasted all night long. They seemed to happen every ten or fifteen minutes. I was not getting much sleep at all, and just couldn't take it. My doctor did a blood test that indicated I was fully in menopause, so now I am going to try Arimidex. I'm crossing my fingers and toes I can tolerate it better than I did Tamoxifen. Hope others don't get the extreme hot lashes like I did!
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  • KimmerB
    KimmerB Member Posts: 8
    edited August 2015

    Hi all. I've been on Tamoxifen for 2 months. I've got the hot flashes and am nauseous, have had some killer calf cramps, but mostly just tired. And I can't seem to focus at all. My brain is scattered - has anyone else experienced this?

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    Kimmer- I have been on for about 3 weeks now. Definitely experienced insomnia, made worse by the hot flashes. I take a frozen gel pack with me to bed wrapped in a towel and reach for it as soon as I feel it coming on. It stays cold/cool most of the night so it saves me getting up then having even more trouble getting back to sleep. I do hate them, especially in the summer, at night, when I'm trying to sleep.

    I also experienced, within one week of starting, major muscle soreness and stiffness. Quads, calves, Achilles' and hams, in that order. I had just started, or tried to start a walking program and it made it almost impossible. I backed way off what I was expecting myself to do. I started taking the pill at night, thinking most of the muscle soreness might happen at night, and just kept trying.

    I do believe I am acclimating a bit to it now. I am not ready to quit, though QOL issues are very important to me.

    I also started a seniors (I am 58 and way behind the 70 and 80 yr olds in the class) yoga class, designed mostly around chair yoga. I can do this. It is helping me stretch out those muscles a bit, and making it possible for me later in the day to do a bit of a walk.

    I am very lucky to have found this class down the street from my house, free, twice a week. You might check with your cancer center or local senior center and see if they have anything, and if you are too young if they could make an exception for you based in the fact that you FEEL LIKE a senior. I had never done yoga before. I am not limber. But the fact that it is geared towards older people is making it a good fit for me. Exercise, when I could do it, made me feel better during chemo. I'm hoping it will offer the same benefits, and help me tolerate the Tamoxifen, which is critical to my non recurrence.

    Good luck.


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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited August 2015

    Don't get despondent or give up ladies. I've been on it for about 6 months now and I think my hot flashes are reducing. Weight gain has settled, aches and pains are bearable. Certainly a walk in the park compared to Femara/Letrozole. I have heard the side effects can reduce over time.

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited August 2015

    I feel like my hot flashes are subsiding somewhat. I wasn't menopausal before chemo, so I suppose there's still a chance that my periods will resume. It's hard to know what causes what in terms of SEs after a while! Generally speaking, I'm tolerating the Tamox just fine, after 4.5 months now.

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  • hodgy
    hodgy Member Posts: 15
    edited August 2015
    Hi midlifecrisis... I started Tamoxifen in March. So far, I've had no major side effects. Like you,I did a lot of reading regarding potential side effects. I was extremely nervous to start based on the many posts I read. I do have hot flashes but it hasn't been bad at all. Mostly, I get very warm for a short time. Try peppermint oil! Put a dab behind each ear and you will have a pleasant surprise. Go to a health food store and you will find a bottle. Also, I read so many posts about weight gain. No woman, or man, wishes to put on weight while on Tamoxifen. I was determined not too. I have lost 19 pounds so far. Yes, it takes hard work. You'll have to give up most carbs - no bread, rice, potatoes, cookies, chips, alcohol, etc - all the stuff you love. Then, I started to make fruit smoothies in the morning and green veggie juicing in the afternoon. Be aware that carrots and beets can spike tryglicyeride levels. It happened to me so now i focus on mostly green veggies.There's lots of info out there for recipes in books, apps, and on the internet. I eat lots of salads for fiber. And I eat lots of nuts for snacks when hungry. Finally, you have to exercise. Run, walk, bike, classes, or whatever you are comfortable doing. But be sure to add weight resistance training. Tamoxifen and all those other meds are working to add fat around our middle so building muscle will help to counter that effect. It is hard work but it can be done. I do get a little tired at times but it hasn't stopped me from exercising at the gym or riding my bike. That's it for me on the side effects. It hasn't been bad at all. We are all different and this is a strong drug that will effect all of us differently. Try to be positive. Best wishes to you and all going though this....
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  • molly1976
    molly1976 Member Posts: 403
    edited August 2015

    This is going to sound weird but I'm not sure if I'm having hot flashes or not. Maybe warm flashes? I will sometimes be sitting around and feel suddenly warm and will get little pinpricks of sweatiness around my scalp, but it is never more than that. And sometimes not even once a day. I WANT hot flashes! I want to know it's working!

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  • calidancer
    calidancer Member Posts: 88
    edited August 2015

    I can't seem to make myself take the first dose! I feel it is an impossible choice: do everything I can to be here for my young son or lose my sexuality and thus jeopardize my relationship with my husband. I am terrified of the sexual side effects. Hot flashes I think I can deal with. Vaginal atrophy? Ahhhhhhhh! I'm being dramatic I know. But I wish I'd thought of this sooner, I may have opted for the double Mx. What good is a breast with feeling if there's no sex? I need a swift kick in the rear, a cheerleader to urge me to take the plunge. One day I'm in the best shape of my life, feeling great and then the rug, yanked. Everything is different and and I don't want it to be. It's really hitting me. I think I've been holding it together and I'm breaking down. Wow, must be tired.

    Appreciate the space to rant.

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  • calidancer
    calidancer Member Posts: 88
    edited August 2015

    Ok I'm a big baby. I took it.

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  • hodgy
    hodgy Member Posts: 15
    edited August 2015

    Hi Molly, I get "warm "flashes also. I've heard so many women describe the hot flashes that I think I will be thankful for the warm ones. Hot flashes are not pleasant. Warm means the meds are working... If the flashes get annoying try peppermint oil. Put a dab behind each ear. You will get a pleasant surprise... it cools you! Best wishes!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    calidancer- if it's any consolation, having the BMX didn't spare me from the HT. Although it does reduce recurrence, slightly, I mostly had it done for symmetry (I didn't want reconstruction- no more surgery-ack) and to avoid ongoing mammos and diagnostic biopsies etc. it was still estimated that it would reduce my recurrence rate from 30% to 20% if I took the Tamox. So I'm taking it. There are no good choices. But good for you for overcoming your fears and starting.

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    BMX plus tamoxifen here. My MO said several times that there are things to do for vaginal effects and to report them to her if they occurred. A person might as well try the medication and see how it goes. Good for you for starting!

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  • molly1976
    molly1976 Member Posts: 403
    edited August 2015

    calidancer, I too was terrified of the sexual side effects - I actually had a full-on sobbing breakdown once I started learning about the possibility - but I have found it to be a non-issue so far. Way better than during chemo, for sure.

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited August 2015

    calidancer ...good for your for overcoming your fears. Any of the SE's suck, but so many of us get only some, minimal or even none of the most feared SE's so it is worth trying under the circumstances. I have been lucky so far (knock wood!) and have not experienced vaginal issues (or any SE's beyond the occassional "warm flash"). A good friend of mine did (dryness) when she first started on Tamoxifen and said it was aweful, but has since said that over time her body adjusted and does not have the issue anymore. I hope you are pleasantly surprised and don't have any problems taking it.
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  • Michelle1103
    Michelle1103 Member Posts: 6
    edited August 2015


    My oncologist said that the cysts were not caused by Tamoxifen, which I took for 6 months. I stopped taking it two weeks ago due to severe daily headaches. She gave me a Lupron shot and I started on Lupron pills a week later. I have to have a bi-lateral salpingo-oophorectomy on 9/18/15. My oncologist was going to recommend this surgery even before she knew about the painful cysts because she said it will increase her treatment options. I am still having headaches everyday with no relief in sight. I'm so discouraged and wondering if the benefits of these medicines really outweigh the risk of not having them. I had a bi-lateral mx and thank God my nodes were negative. So this hormonal tx is to prevent or reduce chance of reoccurance. Then again, the headaches could be caused by something totally unrelated like stress and tension. I see my primary care physician next week and I'm hoping to get some sound advise about how to proceed.

    Does anyone know how long Tomoxifen stays in your system?

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited August 2015

    I recently read that Tamoxifen clears your system after about 6 weeks. I'm not sure if that's accurate, though.

    How does your oncologist know your cysts weren't caused by the Tamoxifen? Are you premenopausal? If so, ovarian cysts are a very common side effect and I would be concerned if your oncologist didn't know that.

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  • MidLifeCrisis
    MidLifeCrisis Member Posts: 68
    edited August 2015

    michelle110.. thanks so much for the update and it's good that you can be assured the cysts weren't from Tamoxifen. I wouldn't think it could cause such troublesome cysts after being on Tamox just 6mos. SummerAngel.., I think cyst growth takes time and is only a real concern with long term use of Tamox (my understanding is that it's actually not even a real "risk" w/in the 5yr use range and that it's only a concern for those of us on the 10yr Tamox plan - can anyone confirm??).

    I have no idea how long Tamox stays in the system ... but I was told to stop taking it 2weeks before a surgery ... I wondered if that really had a benefit. Good luck to you and I hope you can get to the root of your headaches and get some relief soon.
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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    It can interfere with clotting, which is why it is stopped before planned surgeries.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited August 2015

    the half life if Tamixifen is 5-7 days. Fairly long. I couldn't find a source for the specific amount of time it stays in your system, but they also recommended dropping it at least two weeks before any chance of conceiving/pregnancy.

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  • calidancer
    calidancer Member Posts: 88
    edited August 2015

    My PS said no need to come off for my exchange next week...

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  • calidancer
    calidancer Member Posts: 88
    edited August 2015

    Also thanks all for the support. I guess I'm on the Tamoxifen train... Woo woo! 🚂🚂🚂

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited August 2015

    I developed large, painful ovarian cysts within 6 weeks of taking it. Also, many studies say that cysts are a low risk because they don't separate premenopausal and postmenopausal women. In the ones that do, ovarian cysts are VERY common in premenopausal women. Here's just one example: http://jjco.oxfordjournals.org/content/35/10/607.f...

    49.1% of pre (or peri) menopausal women developed ovarian cysts. The average time taking Tamoxifen was 19 months, but ranged from 3-48 months.

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  • Piscean
    Piscean Member Posts: 50
    edited August 2015

    Calidancer,

    I can totally relate. I stopped taking the tamoxifen two weeks before my second surgery for unilateral breast recon and I really don't want to go back on it. I've gained a ton of weight, feel weepy all the time and I can't seem to make myself sexually aroused...how am I supposed to have a sex life? Can it really make me live longer or is this just anecdotal? I want to have a good life, even if short.

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  • Michelle1103
    Michelle1103 Member Posts: 6
    edited September 2015

    Thanks for sharing SummerAngel. I guess there is no way to know for sure if the medicine caused the cysts or not. I am 41 and had a hysterectomy at 38; but the Dr. left my ovaries, so now I he has to go back and get them. I am still having headaches everyday and they never go away even though I have switched to Lupron. I have an appointment with a neurologist in October; but I am going to go ahead and get my PCP to order an MRI. I have a history of tension headaches; but never anything like this. Praying to get some answers and relief soon so I can get back to enjoying life with my two precious little girls. (ages 17 and 8)

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  • atanea
    atanea Member Posts: 58
    edited September 2015

    Hi everyone,

    I took Lupron/Zoladex shots for 2 years, together with Tamoxifen, I stopped the shots 6 months ago, now I'm only on Tamoxifen, and I'm now dealing with uterus heterogeneous lining thickness and a very big ovarian cyst that appeared in just one month, from nowhere to 60 mm?! Not even sure if it's really a cyst or another cancer. I talked to a doc today that told me that Tamoxifen may cause ovarian cysts..I hope he is right and it's not cancer..

    Talked to many docs, and they say opposite things, my onc. it's firmly against taking my ovaries out, he believes the benefits rarely outweigh the risks, the gyn onc. says I should take it ALL out, because I came from a family (but not my direct family) with a high risk (no ovarian cancer, breast cancer, endometrium cancer, melanome, kidney cancer and colon cancer ) and I also have fibroids, some with 30mm and 40mm, a small dermoid cyst and now this big new cyst, that they are not sure what the hell is...don't know what to do...

    Did everything went fine with you Michelle110… ?

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