Anyone Taking 10mg of Tamoxifen Instead of 20mg?

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kec1972
kec1972 Member Posts: 269

My MO agreed to let me start tamox at 10mg for 2 weeks to let my body adjust, but in that time I've noticed some joint stiffness, mild hot flashes, bladder pressure, and copious vaginal discharge that I never had before. I shudder to think what will happen when/if I go up to 20mg. At 4 feet, 11 inches tall, and 108 lbs, I am a small woman, and hate the thought of taking 20mg every single day. I'm going to check with my MO when I see him next month, but for now, I think I'm going to cut the pills in half and continue with 10mg daily rather than 20. Just wondering if there's anyone else out there who does this.

Comments

  • gailmary
    gailmary Member Posts: 332
    edited May 2019

    kec, i dont know if or of anyone thats done this but it makes lots of sense to me. I heard of some ladies on letrezole that take a pill every other day. If you are smaller you may very well need less. . I dont understand why your blood or whatever cant be tested to see if youre getting enough. But they don't do it that way. We ARE all different and have different needs. You would think if side effects are severe that might indicate your taking too much. Wonder what your dr will say. Good luck.

    GAILMARY


  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited May 2019

    There are a couple other threads with several people posting about this. Perhaps do a search so you can get more opinions?

  • Dani444
    Dani444 Member Posts: 522
    edited May 2019

    Forum link (scroll down to the next to last post by Pebblesv)

    I hope I have linked this properly. There is a lot of discussion about dosage in here. Also some folks that are staying on10 mg. It might be worth the read.

  • kec1972
    kec1972 Member Posts: 269
    edited May 2019

    Thank you Dani! I hope you are well. I will be discussing this with my MO next month. I just don’t agree with the blanket dosage of 20mg. Im tiny and think I’ll do just fine with 10.

  • KristieLynn
    KristieLynn Member Posts: 12
    edited May 2019

    I am on 10 mg . I tried tamoxifen two years ago and had to get off it after a month .... then I tried again .... got off it again . At the time it was 20 mg . My oncologist has now suggested 10 mg for a month then 10 mg twice a day. I am already having side effects And know that’ 20 mg will be too strong

  • kec1972
    kec1972 Member Posts: 269
    edited May 2019

    Yes Kristielynn I agree! I'm not willing to feel this crappy. I may just take 10mg every other day and see how I feel. Were you DCIS or invasive?

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited May 2019

    I'm on 5 mg per my MO.


    Here are the studies she gave me:

    Tamoxifen At 5mg Halves Recurrence

    "And although the patient numbers were relatively small, tamoxifen at 5 mg/day also reduced the risk of contralateral breast cancer by 75%, results of the TAM01 study showed."

    Trial of Low Dose Tamoxifen

    Low-Dose Tamoxifen May Be an Option to Reduce Risk of Recurrence, Invasive Disease After Non-Invasive Breast Cancer

    "This study did not compare 5 mg with 20 mg [of tamoxifen], but the data seen here were pretty similar to data with the 20-mg dose as far as protecting against cancer," said Virginia Kaklamani, M.D., professor of medicine and leader of the Breast Cancer Program at the UT Health San Antonio MD Anderson Cancer Center, who moderated the media briefing on the study. "This is pretty compelling and something I would try in my clinic," she said. "Whether to go lower than 5 mg is an interesting question, but the reason to stick with 5 mg is mainly pragmatic. The smallest tablets we have are 10 mg, so to split them more than in half would be difficult. I think that for the time being, 5 mg would seem to be a good dose."


    Biologic Activity of Tamoxifen At Low Doses


    "Our results show that both 10 mg/day of tamoxifen and 10 mg/alternate days of tamoxifen are comparable to 20 mg/day of tamoxifen in modulating a wide array of estrogen receptor-regulated biomarkers, including established or putative surrogate end points of cardiovascular disease such as cholesterol (24), fibrinogen (39), Lp(a) (19), platelet count (40), and blood cell count (41), as well as promising surrogate end points of breast cancer such as circulating IGF-I (31,42)."



  • edj3
    edj3 Member Posts: 2,076
    edited May 2019

    Spoonie77 thank you for sharing these studies--fascinating reading!

  • kec1972
    kec1972 Member Posts: 269
    edited May 2019

    Thanks Spoonie, that is great info to share with my MO next month. I’m sure he’s not going to give me his blessing to continue with the 10mg, but oh well. Maybe if I show him this info...

  • kec1972
    kec1972 Member Posts: 269
    edited June 2019

    I don't understand why we as women and patients aren't asking for a lower dose. If tamoxifen stays in your system for 35 DAYS after stopping, why do we need to take 20mg? Who's to say 10mg wouldn't be just as effective, with a lot fewer intolerable side effects

  • Veeder14
    Veeder14 Member Posts: 880
    edited June 2019

    I was told the 20 mg dosage was based on research studies but even so my MO can't explain why taking a lower dose might be sufficient. From what I read, the daily dose a long time ago used to be 40 mg/day. I can't imagine taking that much. I think more studies are needed with a lower dose. If a lower dose is effective and has less side effects, then more women would probably continue to take it and be less miserable.

  • Mymomsgirl
    Mymomsgirl Member Posts: 174
    edited June 2019

    kec I did 10 for a couple of weeks and then twice a day for a couple of weeks then I went to 20 and after about 10 days the hot flashes increased. I went back to 10 twice a day and haven't been doing bad on it. My MO is good with it, she said why a lot do the 20 once a day is convenience. She has looked at the lower dose study but she thought the study was a pretty small sample. If 10 is more tolerable for you I would think some is better than none. If you are going to try 20 maybe do the am/pm idea, your MO can write the prescription so you get 10mg pills. Good luck!

  • Artista964
    Artista964 Member Posts: 530
    edited June 2019

    If you can tolerate 10 in the am, 10 in pm I'd do that. Longer studies are on 20. Not enough on 10...

    You don't need 10 mg pills.. just buy a pill cutter. Cheap

  • gb2115
    gb2115 Member Posts: 1,894
    edited June 2019

    I think most of them are going to go with the 20 mg since it's been satisfactorily studied. If

    10 mg research exists that they feel is insufficient (i.e., small sample size) then most are going to stick with standard of care. Otherwise an angry patient might come back at them later if a lesser dose fails to prevent recurrence. I can honestly see wanting to stick with standard of care, from a provider point of view. Perhaps more research will be done.

  • kec1972
    kec1972 Member Posts: 269
    edited June 2019

    I just think it’s a shame that no one is willing to study a lower dose for IDC/ILC. So many suffer with debilitating side effects at the 20mg.

  • gb2115
    gb2115 Member Posts: 1,894
    edited June 2019

    I wonder...along those lines, if it could be viewed as potentially unethical. I don't know...if 20 mg is statistically significant at reducing risk of recurrence, is it unethical to gamble with people's lives by potentially allowing their cancer to return via a decreased dose. But maybe not because clearly in all the mammaprint studies treatment was withheld. So maybe not. I don't know the answer to that...it's just a thought.

    Also maybe the fact that the drug is generic so maybe it would be harder to get financial backing for such a study?

    I really have no idea what I am talking about here, I'm just thinking.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    kec1972 -> there are many studies out there. some are not in the final arm yet, so we still have to wait. however the results that are in, do seem to show in a significant manner that lower doses function in the exact same manner as 20mg.


    these are a few that my MO referred to my.


    Here are the studies she gave me:

    Tamoxifen At 5mg Halves Recurrence

    "And although the patient numbers were relatively small, tamoxifen at 5 mg/day also reduced the risk of contralateral breast cancer by 75%, results of the TAM01 study showed."

    Trial of Low Dose Tamoxifen

    Low-Dose Tamoxifen May Be an Option to Reduce Risk of Recurrence, Invasive Disease After Non-Invasive Breast Cancer

    "This study did not compare 5 mg with 20 mg [of tamoxifen], but the data seen here were pretty similar to data with the 20-mg dose as far as protecting against cancer," said Virginia Kaklamani, M.D., professor of medicine and leader of the Breast Cancer Program at the UT Health San Antonio MD Anderson Cancer Center, who moderated the media briefing on the study. "This is pretty compelling and something I would try in my clinic," she said. "Whether to go lower than 5 mg is an interesting question, but the reason to stick with 5 mg is mainly pragmatic. The smallest tablets we have are 10 mg, so to split them more than in half would be difficult. I think that for the time being, 5 mg would seem to be a good dose."

    Biologic Activity of Tamoxifen At Low Doses


    "Our results show that both 10 mg/day of tamoxifen and 10 mg/alternate days of tamoxifen are comparable to 20 mg/day of tamoxifen in modulating a wide array of estrogen receptor-regulated biomarkers, including established or putative surrogate end points of cardiovascular disease such as cholesterol (24), fibrinogen (39), Lp(a) (19), platelet count (40), and blood cell count (41), as well as promising surrogate end points of breast cancer such as circulating IGF-I (31,42)."

  • Artista964
    Artista964 Member Posts: 530
    edited June 2019

    needs more research like the 20 mg has...

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    since 10 mg research and such got underway much later than 20 mg, it'll take time to have 30-50 studies to equal the amount of research 20mg has. there are many studies that have finalized but are still processing the data so have not released the results as of yet. from the estimates my MO has given me, the public should hear more in the next year or two about those larger studies.

    for me, it's enough that my MO is comfortable enough with the last few years, granted smaller trials, of 10 mg research so that I was able to try Tamoxifen. even at 5 mg I couldn't tolerate it. i can't imagine what 20 wouldve done to me. i for one am glad they have started the ball rolling so that other women will have this opportunity now, versus years from now. :)

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    There are currently 418 studies listed, involving Tamoxifen and Breast Cancer, some finished, recruiting, or in other stages of progress.


    Search Results of Tamoxifen/Breast Cancer at ClinicalTrials.gov


    Just looking at the first few pages, there are quite a few studies specifically looking at dosage. :)


    I'm looking forward to hearing more about their findings in the months and years to come.




  • Warrior2018
    Warrior2018 Member Posts: 380
    edited June 2019

    Hi all. I’m currently taking 5mg a day. A 10mg every other day. I tried 20 mg and experienced too many side effects like extreme exhaustion, mood swings of course and hot flashes so I stopped on my own. This was all monitored by my home town Onc. I was being pressured into continuing the med which was extremely upsetting because it was life changing- in a negative way. So I decided to return to my Onc at the Cleveland Clinic. He was very understanding and explained that each person’s metabolism is different and therefore the way medicine is digested and used is different for everyone. He didn’t pressure me but explained the benefits of even a low dose. He also stated that what’s most important, more than the Tamoxifen, is diet and exercise.

    So I’ve been on 5mg for about a month. No period thankfully but I do experience some headaches every other day that I think are related to the hormones or lack thereof.

  • Mimasw3474
    Mimasw3474 Member Posts: 2
    edited June 2019

    I’m taking 10 mg every other day can’t handle even the 10 mg every day.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    I was on 5 mg for 2 months (end of March to end of May). In the beginning, not too many SEs. Then gradually joint pain/bone pain/fatigue. Started in my joints that already have arthritis. Spread to the rest of my body. By the 5th week I could barely get out of bed or do my yoga or my PT. Finally gave up and will take a break, maybe consider trying different brands later this summer or move on to injections. Even though my recurrence/mets risk is approx 35% w/o hormonal treatment, I could no longer function as a 41 yr old with Tamoxifen. Life was no longer life. It was a nightmare. I'd rather live now, rather than suffer. I'm about 6 days out now and did the dishes for the first time without crying or exhaustion! It was BLISS! :)

  • kec1972
    kec1972 Member Posts: 269
    edited June 2019

    Spoonie, I’m so glad to hear you’re feeling better. QOL is too important to be glossed over. Iam also about to call it quits on tamoxifen and go the natural route. GYN found cysts on both ovaries which were not there before(never any history of cysts) and also a thickened lining of 13mm(after only 6 weeks at a half dose!).

  • dtad
    dtad Member Posts: 2,323
    edited June 2019

    Warrior2018...so happy you are doing better now that you are taking 5mg of Tamoxifen. What really struck me about your post was your MO at Cleveland Clinic, which is a world renown facility, emphasized how important diet and exercise is! IMO most MOs put anti hormone therapy way above it, which I don't agree with. Good luck to all.

  • Warrior2018
    Warrior2018 Member Posts: 380
    edited June 2019

    Thank you dtad! I was very happy with that too. With all the research behind diet and exercise I think it’s finally becoming too difficult for doctors to ignore.

    So sorry to hear about your reactions Spoonie and kec. I would have stopped taking it too. Or will stop I should say- if I end up with the same reactions.


  • Warrior2018
    Warrior2018 Member Posts: 380
    edited June 2019

    Sorry to hear about you not being able to handle it as well Mimasw. Maybe talk to your oncologist but depending on your diagnosis (which I can’t see in your signature) diet and exercise can be just as effective.


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