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Has anyone felt BETTER on tamoxifen?

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  • lizabethm
    lizabethm Member Posts: 105
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    I was so dreading taking Tamoxifen and also contemplated not taking it. But, I've been on Tamoxifen about 6 weeks with ZERO side affects. And, chemo put me into menopause, so not having PMS is pretty awesome!

  • Peaceful02
    Peaceful02 Member Posts: 3
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    Just took my first dose of Tamoxifen last night! I'm focusing on it giving me added protection! My doctor recommend I take it at bedtime due to the fact it can cause some nausea. I have battled insomnia for many years and woke up more than usual last night - not sure if it was because of the Tamoxifen. I am curious about when others take it - AM or PM? Do you think taking it at night can cause insomnia? I didn't go into too much detail with my onc about SE because I feel sometimes it's better to not know - even Tylenol can have SE! The only SE onc said could be a serious one is the increased chance of a blood clot and/or stroke and wants me to see a cardiologist because I'm 68, however, I am in good health. Don't take any other prescriptions just vitamin supplements. Would appreciate to hear from some of you regarding your experience with the time of day you take your dose.

  • lifechoices2017
    lifechoices2017 Member Posts: 6
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    Peaceful02; Ive been on Tamoxifen since Jan 2018 and other than a little stiffness and a 'few' lbs gained I feel fine! PLEASE PLEASE PLEASE don't stress over taking it because EVERYTHING comes w/SE's (lol). I actually just went to my PCP on Wednesday and she even stated that 'tamox' was being kind to me! I'll be 50 on Sunday; i weigh about 246 (weighed 232 prior to dx)... not on any meds (no blood pressure, diabetes, cholesterol)... and IM THANKFUL! DONT get me wrong, Im sure that if you survey 100 women everyone will have some good; some bad and some horrible...but don't get it in your head because then it'll be so... Im believing in God for continued restoration and ANY SE's that are not for me I don't claim. Im NOT THAT BOTTLE! lol... As for the time of day, i started at 6pm but because of my schedule sometimes I'd forget and it'd be later. Im not sure if I had insomnia because I feel since my dx I sleep differently. I did just change to start taking it at 12noon, but i don't feel any different. I also take vitamins (multi / vit d and biotin). I hope this helps and I WISH you all the best in your continued healing!


  • ShockedAt48
    ShockedAt48 Member Posts: 95
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    I’ve been taking tamoxifen for a year in the evening before I go to bed. No major side effects. Sometimes I get moody but probably because I’m in peri menopause.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I split my dose, 10 mgs at 8pm or a little earlier if needed, then again at about 11pm. I am awake only because I had a steroid shot for a sinus situation. Generally, I sleep very well. I took 10mgs for 2 to 3 weeks to get adjusted, and then added the other 10mgs a couple hours later in the evening. Other meds that we take are gradually given, to reduce side effects. I recommend by month 2, to add a little magnesium which will help with sleep, bone building and leg cramps. I add minerals, spices and some herbs (safe ones to take) as different side effects appeared. Ginger soothes stomach issues, milk of magnesium helps constipation, walking of course helps everything.

    Remember, it is not how you start taking a medicine, it is how you continue to take it and how you finish your journey.

  • lifechoices2017
    lifechoices2017 Member Posts: 6
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    Shockedat48 and Michelle in cornland...

    It looks like our dx were pretty close; I was age 48; IDC Stage IIA; Grade 1 - 2.5cm / lumpectomy Oct 19 2017; whole breas rads (right side) Nov 29 - Dec 27 2017 and on tamox since.

    AND YES I say that I AM NOT THAT BOTTLE! Its doing what its supposed to and im ok w/that. I too was peri-menopausal prior to dx; i had my last cycle Nov 4 2017 (before rads or tamox) and i think tamox just guided me in (nothing for almost a year now).

    I actually met w/my MO/RO/PCP in July to see if I need to 'remove the lady parts'. They did the ultrasound and transvaginal and all was well... so they said let it be!

    Just met w/my PCP last week because I have gained a few lbs during the menopause and tamox; but thats expected. Ive just changed my diet and trying to walk more to stay mobile and keep the joints flexible... but all in all, i feel good!

    My sleep is off sometimes; not alot but im a busy lady so i think sometimes my body is resting EVEN IF my eyes arent closed (lol).

    But Im glad to hear that you all are doing well on your 'journey'. I read SO MANY bad stories on the whole ordeal and thought that Itd be unbearable... but I stopped reading and starting LISTENING to my body and again, ive done very well! Im 1 year CANCER free and contrary to all the bad that COULD have happened, I have no complaints...JUST THANKFUL!

  • palesa2018
    palesa2018 Member Posts: 58
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    Thank you for sharing Lifechoices, very encouraging. So important not to anticipate the SEs.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    I love this thread! Bump

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    Bumping

  • umakemehappy
    umakemehappy Member Posts: 28
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    Not long before my BC diagnosis, I was diagnosed with high cholesterol (runs in the fam. I am a very healthy eater and get decent exercise). Here I thought my life was literally over with my HIGH CHOLESTEROL diagnosis (How dumb was I???? Just goes to show how things can ALWAYS be worse!). Doctor prescribed a statin, but I cannot stand taking meds, and I had a block in my mind that statins are for "old" people, lol. So I bought some fish oil pills (also for "old" people, but whatever!) and refined my diet. Next thing you know, I'm diagnosed with BC, which became my new and much bigger focus for the past year. Finished taxol/herceptin and now, 6 months into the tamoxifen stage of my treatment, my cholesterol is LOW!!!!!!!! At least that worry is off my plate. ; ) Lowering cholesterol is an actual side effect of tamoxifen!

    As far as BAD side effects from tamox, all I have are stiff ankles in the mornings, which is resolved within minutes after walking down the steps. I have ZERO other side effects. To the point that I pretty much demanded to my oncologist to be tested to see if I'm actually getting the benefits of this medication if I'm getting none of the bad side effects. (She said no, it's fine. They are used to continually talking me off the ledge at this point).

    So, it's not ALL bad.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    Umakemehappy: This is amazing! I hope to not have bad SEs too. Good luck!

  • Deda6266
    Deda6266 Member Posts: 2
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    I most definitely felt better after changing to Tamoxifen. Have been on it for 2 years. But now I’m experiencing hair loss. They tell me it is cyclical

    And will get better but not to say it won’t happen again. Ugh! I have another three years of this treatment.

  • mocame
    mocame Member Posts: 557
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    I am so glad to have found this thread. I'm trying to figure out what medication to go on (Arimidex or Tamoxifen) and reading all of the posts about the bad SEs had me stressed out. I needed to know that not everyone has horrible experiences on these medications. It gives me hope that my future QOL may not be too bad after all.

  • palesa2018
    palesa2018 Member Posts: 58
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    Hello mocame. I have only been on Tamoxifen for 9 months, so far so good. No significant SEs. Some hot flashes especially at night, other than that all good.

    So after your original diagnosis you didn't take any hormonal therapy?

    All the best

  • mocame
    mocame Member Posts: 557
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    Palesa2018 - No, my MO didn't recommend any hormone therapy with my first diagnosis because I was given only a 2% chance of recurrence and my MO said the chance of side effects were worse than the % of recurrence. Well, I now know how that worked out...

    Scared

    But, although I was shocked to be diagnosed again 11 years later, I probably shouldn't have been. I had DCIS everywhere in my breast and when they did my BMX, didn't get a big enough clean margin and had to take more during my reconstruction exchange. My 2nd tumor was near the incision. There is never a 100% guarantee that they get it all.

  • pebblesv
    pebblesv Member Posts: 486
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    Hi all - I’ve been on tamoxifen for 9 months as well and am doing great on it. Note that my MO approved a 10mg dose so maybe that’s part of it. Sometimes warmer at night but for me who is usually freezing that’s a good thing. Cycle went from 25 days to 31 (after a bit of irregular then straightening out again) so I can say that getting that time of month and cramps less often is definitely a positive!

    No joint pain, no dryness, no other SEs that I know of today. I take mine at 8pm every night. I try to eat clean and stay active so maybe that helps.

    For all the ladies nervous about trying it, I was super nervous too. A lot of people who do well on tamoxifen don’t post as much because they are doing fine. My advice is to start at a smaller dose and work your way up so your body can adjust, and just try it as it may all be fine. And if it’s not, you can adjust accordingly.

  • DorothyB
    DorothyB Member Posts: 143
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    Pebbles, a bit off-topic, but see that you were Stage II w/ positive lymph nodes. No chemo? Did they do oncotype test? If so, was score really low?


    I've been doing 12.5 mg daily for over a month now. While my body now has a steady state of tamoxifen, the level of the metabolite is still increasing. I plan to go up to 15 mg daily, but part of me wants to drop down to 10 mg because I'm still dealing w/ a little nausea and fatigue.

  • pebblesv
    pebblesv Member Posts: 486
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    Hi DorothyB - no worries on off topic! No chemo, yes on the oncotype test which was everything. There’s a thread here (I’ll have to dig it up if you’re interested) with women who had really similar cases to mine - ER+/PR+/HER2-, tumor less than 2 cm and 1-3 positive nodes. Half on the thread did chemo, the other half did not and it all came down to oncotype.

    For me, oncotype 21 with a graph showing the % risk recurrence was exactly the same with just tamoxifen vs tamoxifen + chemo. At that point my MO said he would NOT recommend chemo due to the extra toxicity it would introduce for no benefit.

    Part of why I feel I have to keep going with the tamoxifen. In a way it was my ticket out of chemo. Also, another study came out showing 5 mg of tamoxifen was just as effective in preventing recurrence in early stage cases. Part of why my MO has been OK with me staying at 10mg for now although I feel if and when I get to my goal weight I might give 20mg a try.
  • DorothyB
    DorothyB Member Posts: 143
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    Pebbles, my thought process is very similar to yours. Not enough benefit for chemo to be worth it for me even w/ oncotype score of 29. I also feel like tamoxifen is important since I opted out of chemo.

    I did not have any positive nodes.

    The one difference is that I'm really trying to build up to 15 mg / day of tamoxifen now and think I will be giving myself permission to drop down to 10 mg / day when I lose weight and have good habits of strength training, cardio and healthy eating.

  • pebblesv
    pebblesv Member Posts: 486
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    DorothyB - sounds like you are making the right choice for yourself. Funny we are opposite on one thing which is that I plan to increase my dosage when I get to a good weight and you plan to decrease it LOL. For me it’s because tamoxifen sometimes makes it more difficult to lose weight so I want to lose the weight first then just maintain if and when I go up in dose. My MO is OK with that, he said he could be patient with me on that.

    One of the things I learned through this process is that you have to evaluate your own personal risk/benefit scenario and makes the best decision for yourself, then have confidence in it and move forward. Very glad to see you have done that for you!

    For me, I chose a middle path. I did the surgery and radiation and tamoxifen, did not do chemo (but luckily had an oncotype score showing that was 0% benefit for me) and declined a full axillary node dissection due to my positive nodes because of the 40% risk of lymphedema and other studies I found showing women with 1-3 positive nodes that did just the sentinel node biopsy had longer survival rates than ones who did full axillary node dissections. That’s for another thread... anyways, I’ve also lost 20 lbs since my diagnosis and have been making healthier choices on eating and trying to get more exercise.

    All we can do is make the best decisions for ourselves and know how we are today. All I know is I feel good today and that’s enough.




  • flashlight
    flashlight Member Posts: 311
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    Hi Deda6266, I just read on another site if your Vit D level is low it can cause hair loss. Mine is at the bottom at 33. I read on this site about K2 with MK-7 taken with Vit D will raise your level. I found on Amazon the Sports Research brand has a combo K2 with Vit D capsule. I started that in May and I'll have my level rechecked in Dec. Only time will tell. Worth the try!!

  • kec1972
    kec1972 Member Posts: 71
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    Pebbles, I wish my onc were as open minded as yours! Mine wouldn't even entertain the notion of a 10mg dose. So I'm doing it on my own, anyway, since I'm tolerating it pretty well. My oncotype was 21, no node involvement, stage 1A 9mm tumor.

  • pebblesv
    pebblesv Member Posts: 486
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    kec1972 - good for you! My oncotype was also 21, and if it helps encourage you along, I just had my mammogram on Monday and the results came back normal! My oncologist called to tell me that as of today, I'm cancer-free! There was a radiologist on staff who was able to evaluate my scans right away (they do that for you when it's your first mammogram after active treatment) and said, "Everything looks good, see you next year!".

    So, I'm currently feeling really really good with all the decisions I've made, and kind of on cloud nine for a moment with this cancer-free news after a year of being in this fight. I am totally aware that recurrences can happen, but I really feel like I can manage that with the 10 mg dose of tamoxifen, nutrition and exercise. We can't predict the future, so all I know is that today I feel good, and I also feel like ME, still me even with the scars from surgery, still able to do what I was able to do before this all happened because I've managed very well with very little SEs. So... going to enjoy today!

    Also going to enjoy this cute picture of Finley, our newest member of our paw family...

    image

  • kec1972
    kec1972 Member Posts: 71
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    Pebbles, that's wonderful news--CONGRATULATIONS!!! :) If you don't mind my asking, how was your mammogram after lumpectomy?? I'm dreading it as my scar site is still so tender! And what an absoultely ADORABLE pup!

  • Rebalilly
    Rebalilly Member Posts: 13
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    Question -

    Been on tamoxifen for a over a week now. Last three days were awful. Stomach cramping day and night. Wondering if anybody had this and do you think it will subside in time?


  • sm627
    sm627 Member Posts: 142
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    Hi Rebalilly,

    Sorry to hear you are having such horrible stomach cramps. I used to get them too. What helped me with them was taking 600mg of Ibuprofen and using a heating pad. I would also lay down for about half an hour and that seemed to help as well. The heating pad would help reduce the sharpness/intensity of the pain while I waited for the ibuprofen to kick in. How many mg of Tamoxifen are you taking? I was taking 20mg for the first 2 years of my 5 year treatment plan. However, 20mg did not work for me it made my life very hard to live and enjoy, so at my 2 year follow up with my MO I asked if I could please lower my dosage. She said yes, and I was able to go down to 10mg which is working much better for me. Most of the horrible cramps and other side effects that negativity impacted my periods have gone away or have become very mild that I can deal with better then before.

    Wishing you well. I know the tamoxifen journey can be a difficult road to travel. Sending you good thoughts and lots of love and hugs.

    Take Care,

    Sara

    Heart

  • pebblesv
    pebblesv Member Posts: 486
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    Just realized I never responded to kec (sorry! Was not on the forums for awhile...) - mammogram was OK after lumpectomy. Not great but tolerable. I also have the scar - it’s not the most comfortable but it’s at least over quickly.

    Rebalilly and sm627 - I’ve been on 10mG tamoxifen and aside from annoying weight gain and nausea the first week that went away after that week, it’s been tolerable. Rebalilly - the stomach cramps may be your body adjusting just like the nausea with me and may pass. If it doesn’t get better consider lowering your dose

  • dizzyakira
    dizzyakira Member Posts: 41
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    hey, I've been on tamoxifen for almost 9 years now. The only side effect I have is hair thinning. I have about 1/3 of my pre chemo hair. I was diagnosed at 32 and I'm about to turn 42 next month. I do have headaches, nausea, stomach issues, dizziness and fatigue but I had those before my cancer diagnosis.

    I should be off tamoxifen in a year and I hope my hair will thicken. I've tried searching for posts on post tamoxifen hair but didn't see much.

    Cheers!

  • pebblesv
    pebblesv Member Posts: 486
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    dizzyakira - how awesome to hear that you are close to being a decade out from this, and that you've been fighting this in your 30's and 40's too. Congrats on being close to your 10-year milestone!

  • lala1
    lala1 Member Posts: 974
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    dizzyakira---I did T for 5 years and my naturally thin fine hair got even thinner! But about 8 months after getting off it started to thicken back up and now it's back to normal. It did take about 6 more months for that.