Bottle 'o Tamoxifen

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  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    I used Align probiotic, nothing fancy, nothing refrigerated so I don't forget, it's under my nose with my other meds- and it works very well. Got me through chemo too.

  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    Hi, I am finding out since the breast indexing test is relatively new, not all facilities are using it. Mine included, Bonniebee maybe ask your MO next time you see him/her and ask if they can test you? I have asked mine and they are not being used at my facility yet.

    I have a question. can anyone share their Tamoxifen dosage with me? When I was previously on Tamoxifen before surgical menaupause I was on 20 MG once a day. I picked up my prescription of Tamoxifen and never bothered to read the bottle and so been taking the 20 MG once a day but on the bottle and also I noticed in my visit summery it says I am to be taking Tamoxifen twice a day- 20 MG . I am confused again. I thought 20 MG was the standard dosage of it? Anyone else take it twice a day and does the dosage matter if you are pre or post menopausal? I really think I may need a diff MO as this one sure never explains anything,

    Yes, I do on occasion used Benedryl or Tylenol PM to sleep but been afraid to mix it with the Tamoxifen as so many doctors have varying opinions on the matter, I am going to take Melatonin if I could remember where to go about getting the controlled release kind that I had read about before in the boards. I think it was 3 MG.

    Thanks everyone :)

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    I would double check with your MO if she/he really wants you to take 40 mg a day. I read 1 other person on 40 mg but it's not the standard. T at 20 mg can cause life threatening se's like blood clots whereas AIs are not life threatening, mainly joint and muscle issues.

    On Mon I see my MO. I'm going to ask her about 40 mg a day for myself since I really should be on an AI with my profile. I'm guessing she will tell me about such se's and not agree to it---even though I take a baby aspirin daily to offset possible blood clots. I'll find out and post what my MO says next Mon- but definitely ask your MO. Maybe it's a typo from the pharmacy. I've had that happen too.

  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    ndgrrl...40 mg is NOT the standard dose. Please check with both your doc and pharmacist!

  • lala1
    lala1 Member Posts: 1,147
    edited June 2017

    My probiotic is from the Vitamin Shoppe. It's called Primadolphus Optima in the yellow bottle.

    And ndgrrl---my holistic doc told me about Herbatonin which is a plant based melatonin that comes in a tiny dose of 0.3mg. He said it's always best to start as low as possible. I took it for about a year and got my sleep regulated then weaned off. I still sleep pretty well. I buy it from Amazon.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited June 2017

    I'm on 20mg a day -- and wonder if I should be on 10mg. I know that's not standard (ever) but I don't weight much. I'm kid sized. ;)

    And now to my next question for the team here.

    I know it's not the most common complaint, but I think I'm losing weight on tamox. And I have NONE to lose. Yes, I'm eating well and exercising more. I wasn't actually bad on either count before C. But anyhooo....I cannot attribute this to anything else. Having no issues aside from that. I lost a quick 5 at C diagnosis from I think cutting out nightly wine/cheese combo! ;) And now another 5-7 gone like nothing in the last month. I'm literally disappearing. I don't skip meals, etc. But may have to go on higher calorie but less healthy for the summer to try and combat this. Any advice?

  • HoundMom
    HoundMom Member Posts: 14
    edited June 2017

    Hi EastcoastTS. I am pretty small myself and would like to hear what others say. I've been taking the Tamox for a week now. The only side effect I notice is nausea. I am hoping that will go away after my body adjusts. I am goign to ask my MO about 10mg when I go but from what I've read, I think all teh studies were done on 20mg so that's what they recommend. I'll be folowing your responses.

  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    Hi- Thanks so much for the advice- I contacted my MO and my prescription was incorrect. I was only supposed to be taking 20 MG once a day and not twice.

    I am on day 4 and woke up with some nasty nausea. I got myself some probiotics and sure hope they work.

    I have a message out to my MO about taking a baby aspirin. I wasn't told to take one.

    Tammy

  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited June 2017

    I'm not sure if it's the tamoxifen or the BMX, but has anyone noticed more sweating and armpit BO? I also have tons of itching in my armpit on that one side. It's just weird.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    I do sweat and have bo more in my right armpit, the side where no cancer was. Left one where nodes were taken out can but not like the right one.

    Tammy- I was told baby aspirin because I'm at risk for blood clots with my inactivity and still having my port in which u/s had shown possible formation of clots awhile back. It's low dose and so many take it for stroke prevention and heart stuff. Definitely ask before just popping it even though it's low dose to make sure you aren't on something or have something that would make an issue problematic.

  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    I asked my MO if I should take a baby asperin and she answered I could. Mmmm not if I should? This MO is confusing me. Told me even though its only been 3.5 yrs since dx, that I no longer had to take a anti-estrogen drug. I have a strong history of cancer in my family, so to me taking nothing is not an option. I read many take it 10 yrs. i asked her when I should see her again,she said that was up to me too. Grr

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    Haven't heard of MO saying less than 5 years is ok. Maybe change MO? Can't stand up to you stuff. We are there to find out what to do and are not qualified to decide such things ourselves.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    Hello all! I'm nearing my 5-year mark on Tamoxifen (October) so almost halfway there. I've had three primary symptoms to deal with: hot flashes every 1 to 2 hours (arggghhh), vaginal dryness/burning and occasional insomnia. The vaginal dryness and burning was resolved by using Estring. Although it's local estrogen delivered via a silicone ring that's replaced every 90 days, it apparently doesn't release sufficient amounts of estrogen to go systemic (unlike estrogen creams). I'm post-menopausal thanks to a hysterectomy/oopherectomy at 34, so I'm not churning out much, if any, estrogen of my own and it soooo improved my quality of life that I'm willing to take any risk that Estring may have!

    I thought I'd share this; it's the updated guidance to doctors on the protocol for endocrine therapy after BC. I found it fascinating and thought any other nerds out there might, too! It addresses the 5 yr vs 10 yr questions pretty thoroughly (and repeatedly, lol)

  • BlueKoala
    BlueKoala Member Posts: 190
    edited June 2017

    I have LESS sweating and armpit BO!

  • Ade
    Ade Member Posts: 740
    edited June 2017

    With my dx as BC I have been through 2 Aromatase inhibitors and the last stop is Tomoxifen. I have had huge weight gain, joint pain, hair loss, sweats, extreme fatigue and insomnia. So Tuesday I will discuss whether I should go to Tomox. or could I stop (after just a year) altogether. Thank you for your info - the weight LOSS sounds like a gift from heaven for ME!

    Ade

  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    nudgrri...I have never heard of less than 5 years. That is the standard protocol. I would ask your MO or find another! Good luck and keep us posted.

  • Reckless
    Reckless Member Posts: 112
    edited June 2017

    Hi EastcoastTS. I am pretty tiny too, 4'11. I have been on tamoxifen for a year now, and lost 10lb the first 6 months due to diet changes and exercise. But in the last 6 months I gained it back, all around the middle, likely because I slacked on exercise and ate more bread than before. I find it harder to lose weight now despite returning to the previous regimen. So I would talk to your doctor first before changing the diet.


  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited June 2017

    Reckless:

    Agree. I kinda think it's diet change (one bypassing nightly glass of wine and cheese! -- LOL) and increased exercise. Aside from taking a week off this week (somewhat) and just eating what I want, which still wasn't horrible, I think I'll put it back on. Hoping NOT around the middle. Geez.

    For those reading, I also switched brands, as mentioned. Now on Teva, because pharmacy said that is what they usually get. I figured, oh, well, let's try. No noticeable effects to date.

    The pharmacist was really nice and said she'll get me whatever brand I need with regard to brand but, again, since they get Teva normally, that's what I am trying. Told her to note on my file that I want to stick with one brand. Her sister has BC and apparently is having difficult time but she's younger (37). I wonder if younger women have more issues because these changes are being forced on the body earlier. I was already having sleep issues due to age and some things I attributed to hormonal levels dipping. Not hot flashes, though. I'm 50 in Sept and already peri (and have been for a few years we suspected) or perhaps even menopausal (hormones level not completely telling us), but so far, I can't tell much from taking Tamox.

  • commander
    commander Member Posts: 10
    edited June 2017

    I started on tamoxifen about a year ago, and have had lots of trouble sleeping, hot/cold flashes,some joint pain, and trouble concentrating. I'm 56 and 1 and 1/2 years post natural menopause. I recently started to experience vaginal bleeding and excessive discharge. I have a transvaginal ultrasound scheduled for this week. I can't help but worry. I appreciate reading about everyone's experiences here--I have a good list of questions for my gyn and mo from this thread!

  • cgs19
    cgs19 Member Posts: 4
    edited June 2017

    Hi there,

    I was prescribed spirolactone for hair thinning. My derm said not contraindicated for breast cancer, but now I've heard it is.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    cgs19...Here's a study on spirolactone and breast cancer risk. Interesting portion:

    However, incidence increases in the first year of use were not specific for estrogen-sensitive cancers, occurred with both spironolactone and furosemide, and were driven by exposures immediately prior to diagnosis. For drug exposure ≥1 years before cancer diagnosis, incidences of these cancers were not significantly increased. We conclude that associations observed with first use in the year immediately before cancer diagnosis were driven by reverse causality, i.e., because of treatment for symptoms related to the incipient cancer. With respect to breast, uterus, ovarian and cervical cancer, there is no evidence of increased risk with spironolactone or furosemide use.

  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    Ade, I started on Tamoxifen,was put into surgical menaupause started Armidrx, then Femara and a yr later I am back on Tamoxifen. I have minimal side effects on Tamoxifen. I lost some hair. It eventually came back, trigger thumb and mild body stiffness. Tamoxifen might be your thing. My MO said Tamoxifen may bring back the bone loss I had from the Al's and bring my cholesterol back down. I sure hope so

  • ndgrrl
    ndgrrl Member Posts: 741
    edited June 2017

    HI, Has anyone tried Tumeric for hot flashes?

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    If you're going to try tumeric, get the tumeric curcumin with black pepper in it. Before I could really tell, my warm flushes went down significantly but I know some people say it works for them.

  • Outdoorswoman
    Outdoorswoman Member Posts: 28
    edited June 2017

    Hi all, I've been on Letrozole and Armidex, they both caused some not so nice side effects. I'm supposed to start Tamoxifen now. My MO assures me the bone and joint pain will be much better. Can some one tell me how tamoxifen has affected your sleep, if the brain is foggy, and if there is a the lack of wanting to do things fatigue. Thanks


  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited June 2017

    Outdoorswoman, I'm not certain if it was tamoxifen, or the surprising pathology report, but my sleep is definitely not as deep. I take melatonin (dual release) which gets me to sleep and the slow release allows me to fall back to sleep, even when I get night sweats. My brain was very foggy at the beginning, which I now attribute to the longer term effects of anesthesia. I do still have a little word finding difficulty, but I think that it is getting better. My fatigue has also lifted substantially. I'm 11 months out from surgery and I've been on tamoxifen for 9 1/2 months. Starting the drug when there are so many other physical and emotional factors makes it difficult to decouple what is really the fault of tamoxifen. One thing that is for sure due to tamoxifen is dryness!!!

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Saw my onc on Tuesday. Now I am off the Exemestane and will try Tomox. for a month - whenever it gets here. I am sleeping SO much better just being off for a couple of days! If the se's are as bad with the Tomox. I am going off it all. My onc. agrees on the quality of life importance and knows how miserable I was. My BC is not an aggressive one and 90% of all breast tissue is gone (he said that was a good move).

    Ade

  • gardengypsy
    gardengypsy Member Posts: 769
    edited June 2017

    I read the above article. Me and T have 8 years to go and I am post menopausal.

  • lala1
    lala1 Member Posts: 1,147
    edited June 2017

    ndgrrl--- I've been on Tamoxifen for 4 1/2 years and have been on turmeric for the last 4. I can say it definitely helps with my hot flashes. I take Gaia turmeric. It was recommended by my holistic doc and is sourced locally out of NC. It has the black pepper in it which is a must for your body to metabolize it properly. I've also found hot flash relief with 5000 IU of Vit D and a daily dose of magnesium glycinate. All of these were recommended by my doctor.

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited June 2017

    I take the same thing! I was having horrible hip pain and hot flashes and found taking the Gaia turmeric with 10,000 of bit d every other day along with magnesium has helped so much. The magnesium glycinate allows you to absorb more of the magnesium. These meds have been a saving grace to me!!

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