Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Has anyone felt BETTER on tamoxifen?

Options
135678

Comments

  • new2bc
    new2bc Member Posts: 253
    Options

    Sandra60,

    Thanks for giving us an update. So how many manufacturers are there now for Tam? I have picked up my presciption for Teva brand but have not started yet. Can you update us later about your side effects for Teva?  

  • Annette47
    Annette47 Member Posts: 108
    Options

    Thought I'd bump this with an update to see how everyone else is faring.

    So far (2 months yesterday) so good, although I was disappointed this week that my period showed up on day 19.  A few years ago I was 31 days like clockwork, and then the last couple years I was averaging more like 25 days, then I had two longer cycles on Tami so was hoping I was going back to my "normal", but alas it was not to be. 

    Except for the irregular cycles (and at least they are lighter and don't last as long) I still can't really complain of any side effects.   I've even managed to lose a couple pounds.

  • Gertrude
    Gertrude Member Posts: 22
    Options

    Hi annette47



    I'm 48 and been on tamoxifen for just over two weeks. I have started having an amazing amount of energy where before I was tired all the time. The only thing adverse I've noticed is I'm a bit grumpy. Hopefully that will go away. Too early to tell about cycles should know soon. Love these forums such a wealth of information.

  • farmerlucy
    farmerlucy Member Posts: 596
    Options

    Almost two months for me also.  I too had a period right on schedule. Oh well. No major side effects to speak of - a little dizziness, some night sweats, a few hot flashes. Nothing is unbearable. Also I am not having the crazy mood swings, so it may be the extra estrogen, or the Effexor. Either way I'm good with it! I went to a new gyno and she ordered a trans V ultrasound and a uterine biopsy. Said she is going to do it every year. That too, works for me!

  • mamasixtaz
    mamasixtaz Member Posts: 156
    Options

    It has been a month for me and no real problems.  No period in May, will see if this continues...Can't tell if the Tami is creating the night sweats or just getting warmer at night here in Denver.  Mood swings from grumpy to crying continue but tolerable. Have lost a little weight without reallly trying which is a plus.  I am on the Teva brand as well. 

  • miss-marsha
    miss-marsha Member Posts: 14
    Options

    Hi ladies!

    I see a few check ins so I thought I would too! I've been on tamoxifen for 8 months now. (Teva) All of the initial side effects have not returned. My periods are a little irregular, but we are supposed to expect that. The last 2 were 45 days apart, they are shorter and less blood.

    I think I've adjusted well so far. I'll be doing my first mammo since the diagnosis next month hoping for an all clear!

  • Pam7712
    Pam7712 Member Posts: 16
    Options

    Hi all,

    I've been following this thread for awhile and thought I'd chime in. I started Tamoxifen (Teva brand) on April 24th, so it's been about 6 weeks. I was absolutely terrified to begin taking it, but it hasn't been nearly as challenging as I expected (yes, I'm a worrier!).

    The one SE I've had since Day 1, however, is stomach upset. I take the pill with dinner, and feel OK for several hours, but by mid afternoon the next day I feel like I have heartburn. Going to try Pepcid, based on my MO's recommendation, and hopefully that will help. Has anyone else dealt with this? If so, any additional ideas? I guess the silver lining is that it's keeping me from gaining weight!

    Also, I've had night sweats pretty much consistently, which wake me up sometimes -- but I'm taking melatonin (300 mcg) and black cohosh (40 mg) before bed, which seems to help a little. Had my first daytime "extreme warm flush" a few days ago, but haven't had one since. Hope that I don't get more of those going forward. If so, I may have to try Effexor. Also, I'm 46 and am still getting my period -- for now anyway. If you're pre-menopausal, is it common to continue having periods on Tamoxifen? Or do you usually stop having them altogether? I expected them to stop, so I'm a bit surprised.

    Haven't had much in the way of mood swings, joint pain, or vaginal dryness -- although it does seem like my sex drive has decreased somewhat (but it hasn't gone away, thankfully!). It seems like some people's SEs start strong and then fade away as their body gets used to the med, and that others' SEs get worse over time. Isn't it interesting (and strange) how the experiences on this drug seem to run the gamut? Glad to hear there are others out there who are having a relatively easy time of it.

    So far, my SEs seem to be getting a little worse, but they're still very tolerable. I hope they continue to be tolerable. I really want to complete the full 5 years of treatment.

  • miss-marsha
    miss-marsha Member Posts: 14
    Options

    Hi Pam7712,

    I think your symptoms will lessen even more as time goes by. My night sweats are almost non-exsistant now.I too am pre-menopausal and still having periods. Some of the women I've talked to are still menstruating after the five years and have to continue 5 more years. I think it is different with all women so, we are all flying a little blind here!

    Did you get an ok from your Onc. or pharmacist on the black cohosh? I ask because one of my best friends,who is a pharmacist,looked up all the things that help with menopause SE's and found that they all mimic estrogen. Which is what we are trying to block. I was told by him another pharmacist and my Onc. I should not use any of those types of supplements. Also the Black cohosh could be causing your heartburn.

    Hope it continues to go well!

  • gemini4
    gemini4 Member Posts: 320
    Options

    Hi Pam -- I've been on tamoxifen for two months now. I'm premenopausal, just turned 49. I had a normal period last month and expect another one coming up. My MO explained that tamoxifen doesn't induce menopause. She said it certainly brings on menopausal symptoms (hot flashes, vaginal dryness, etc) but that it's not strong enough to make periods cease. She said that menopause happens while on tamoxifen because so many women are in perimenopause when they start taking it, so it coincidentally happens on its own. I personally like the idea of still having periods for a while longer so that the uterine lining gets a regular purging -- my unscientific hunch is this might reduce the odds of endometrial cancer because the tissue is being turned over regularly. But don't quote me on that! ;-)



    I agree with Miss Marsha's concern about the black cohosh. While it does seem to be an effective remedy for hot flashes, I think it's a no-no for us ER/PR+ gals.



    I have been having hot flashes galore. I was having them prior to tamoxifen, so I can't blame them entirely on it. The summer heat is influencing them along as well. Last summer I had them with a vengeance (pre diagnosis, too). They're stronger now, probably because of the tamoxifen. What's new is I'm often freezing after the hot flash subsides ... The sweating brings on a chill. However I made an appointment with an acupuncturist for tomorrow. I read an interesting article about a study that compared acupuncture to Effexor. Both equally relieved hot flashes, but the Effexor group's returned when they stopped taking it, while the acupuncture group no longer had them when their sessions were over. I was considering Effexor, but I'd like to avoid another rx drug ... Acupuncture seems to be a safe option. Only downside is its expense, but my health and well-being are certainly worth it. Will keep you posted in the results.

  • gemini4
    gemini4 Member Posts: 320
    Options

    Also FYI -- Tagamet is in the list of drugs to avoid taking with tamoxifen. (Here's a link to drugs.com -- http://www.drugs.com/drug-interactions/tamoxifen-index.html?filter=3&generic_only=).



    Pepcid isn't on the list, and especially since your MO recommended it, I'm sure it's totally appropriate for you to take -- I just wanted to mention in case others are treating stomach issues with Tagamet.



    Hope this helps. :-)

  • Golden01
    Golden01 Member Posts: 527
    Options

    My MO started me out on 10 mg Tamoxifen twice a day to lessen chances of stomach upset. He's offered to switch me to 20 mg once a day but I've gotten used to morning and night (gives me a chance to take both at night if I forget the morning dose!). 

  • Pam7712
    Pam7712 Member Posts: 16
    Options

    miss-marsha -- My MO did say that Black Cohosh was OK to take, but now I'm having second thoughts. I checked drugs.com and read that Black Cohosh does have a moderate interaction with Tamoxifen, but apparently that's because it can interfere with liver function (as can Tamoxifen). I didn't read anything about it boosting/mimicing estrogen levels. Honestly, since it may be contributing to my heartburn and it doesn't seem to be doing much for my night sweats anyway, I think I'm going to stop taking it.

    gemini4 -- I hope your theory about periods possibly decreasing our risk of endometrial cancer is correct! And your comments about acupuncture are very interesting (although needles do scare me!). I may give that a try before I resort to Effexor. Like you, I'd prefer not to add another prescription drug. Also, thanks for the info. on Tagament. Hopefully taking Pepcid (and getting off Black Cohosh) will calm my stomach.

    I read on another thread that a supplement called DIM+ (diindolylmethane) can help with hot flashes -- has anyone else heard that? I'm going to ask my MO about it. I think it's a substance that's found in cruciferous vegetables.

    Overall, as I said earlier, Tamoxifen is not nearly as "bad" as I thought it would be. But I really would like to make the experience as pleasant as possible. If anyone has any additional information and/or tips, please pass them along!

    Thanks everyone!

  • gemini4
    gemini4 Member Posts: 320
    Options

    Pam, I'm ordering DIM and plan to start taking it very soon.  I asked my MO about it -- she wasn't familiar with it.  There's currently a clinical trial going on to see if DIM can enhance the effects of Tamoxifen (participants are taking Tamoxifen).  I sent her the clinical trial information to review.  She found it very interesting and didn't exactly give the nod of approval ... but neither did she say I shouldn't take it.  So I'm taking that as a green light to go ahead and add it to my current cocktail of Tamoxifen, Vitamin D3, and turmeric capsules.

    Don't let a fear of needles keep you away from acupuncture.  The needles that are used are super flexible and thin -- almost like a fiber optic.  Nothing like what's used in a shot.

  • Pam7712
    Pam7712 Member Posts: 16
    Options

    gemini4 -- what dosage of tumeric do you take? I've heard that's good for reducing inflammation in the body.

  • gemini4
    gemini4 Member Posts: 320
    Options

    Pam, I currently take one capsule daily of Gaia Herbs' turmeric supreme. I think each capsule is 500 mg. suggested dose on the bottle says 1-2 daily. I might increase to two daily.



    Does anyone else here take turmeric ... How much do you take?

  • miss-marsha
    miss-marsha Member Posts: 14
    Options

    Hi Pam7712 and gemini4,

    For what its worth. I see a "Holistic Depth Psyshotherapist" She also prescribes rx meds but prefers a more natural approach if possible. I did try effexor and am one of the few who cant tolerate it. (It makes me vomit within 30 min.)

    I have been using the supplement SAM-e for about 4 months and really do think it has improved my mood and definately helped with the joint pain! Around the same time the night sweats seemed to vanish as well but am not sure if there is a connnection there. Its about $30 for a 42 day supply which seems kind of expensive, but I like not taking another rx.

    I'm kind of a "Granola Girl" and take a hand full of other vitamins and supplements every day, but I'm still afraid of the accupuncture! My Man has done it for muscle tears, he thinks its awesome! I will definately be reading about DIM and also tumeric!

    OH Gemini4! My Oncologist has the same theory about periods and endomitrial cancer! Hope she is right!

  • PaEaglesFan
    PaEaglesFan Member Posts: 57
    Options

    gemini4--My BS told me if my hot flashes become unbearable to let her know and she'll send me for accupuncture, she's had several patients sing it's praises.

  • Vanessa78
    Vanessa78 Member Posts: 1
    Options

    I have been on Tamoxifen AND effexor for the last 2 years and my hot flashes and night sweats are sometimes so awful I have to just sit and and get my thoughts about me or stick my head under the faucet. (Just talking about it has given me one) I am going to talk to my oncologist and see what my options are.  I started talking the DIM yesterday so maybe that will  help.  Or I should move to a colder climate!

  • Missliteeyes19
    Missliteeyes19 Member Posts: 2
    Options

    Hello everyone, I have been done with radiation for three weeks now.  Was supposed to start with Tamoxifen this past Saturday but didnt.  I really dont want to start it.  I am trying to see other options.  Im scared as im sure most of you may be.

  • Missliteeyes19
    Missliteeyes19 Member Posts: 2
    Options

    Any alternatives to taking Tamoxifen.  I was supposed to take it this past Saturday.  I am so against it.

  • Gertrude
    Gertrude Member Posts: 22
    Options

    Missliteeyes19,



    I felt the same way as you. I had my prescription for several weeks and finally I just broke down and took one. For me I still dont know if the benefits outweigh the risks but I think I will stay on it for a while. The only SE I have had so far was I was grumpy the first few days and a little weepy for a few which is not like me. Other than that I haven't noticed anything yet. Best wishes.

  • puppymama09
    puppymama09 Member Posts: 5
    Options

    This is a great thread I usually only see bad things about tamoxifen, I am pretty sure I will have to take it.  Glad to see it might not be as bad as it seemed.  But from what I have read here is it true that you can't take Prozac and tamoxifen?  I need my ProzacSurprised  that scares me

  • awb
    awb Member Posts: 213
    Options

    There is a list of meds that you can't take with tamoxifen, I would check with your doctor and your pharmacist.  I know effexor is one antidepressant that you can take with tamox (it is used to help with the hot flashes), but I don't know about prozac.

    anne

  • MsRef
    MsRef Member Posts: 2
    Options

    Been on Tamoxifen for 1 month. I'm 44 and pre-menopausal, pretty fit and healthy going in to this whole DX.

    Have to say the first few weeks have been fine and like many, I was STRONGLY opposed to taking something with lots of potential side effects. But I decided I had to at least try and see how my body reacted. It is indeed the best defense I have against a recurrence of DCIS or a new primary in either breast. My risk is high enough to try it. Seems silly not too. If it becomes unbearable or too many gynecological issues, then I will have to assess at that point. But for now, I have to try it.

    No hot flashes or night sweats, but I did have some pretty hard abdominal cramping/low back pains a few days before and during my first period on this drug. Wow, it came intensely but really only had 2 days of bleeding. We'll see what next month brings.

    After about week 3, I also feel like I have much more energy than before. Could also be that I am 1 month past surgeries, path reports and the multiple doc appts. Or it could be that my thryoid (TSH) is finally under 2.0. First time in years.

    If you are hypothyroid, watch your TSH and energy levels. Tamoxifen is known to interfere with thyroid function and can require dosage adjustments. I think what I read was that Tamox. will increase your TSH readings, which makes you more hypo. 

    Had my annual exam last week and my GYN ordered a transvag ultrasound which she said would be a yearly requirement with her. Yes, she is a liitle on the conservative side, but it's an easy procedure. So I can do it. 

    Other than that, my energy is good. Back to running, swimming, weights, yoga and I have dropped a few pounds without really trying. AND finally got my sexual mojo back after a few years of it being non-existent. Yee-haw!  Maybe the stimulation of estrogen in the uterus is not such a bad thing?!?!

  • farmerlucy
    farmerlucy Member Posts: 596
    Options

    The mojo thing IS a nice side effect! Also thanks for the info re: thyroid.

  • Carlitta66
    Carlitta66 Member Posts: 1
    Options

    This thread has been so enlightening.  First of to even hear that weight loss is even a mear possibility is a big surprise to read about!! There is hope......maybe.  I am taking the TEVA Tamoxifen and have only been on it for 10 days.  I was scared to start taking it because of all the side effects it has, mostly because I need to lose some of this awful chemo weight and I don't want the Tamoxifen to detour my weight loss efforts! I am so done with side effects I just didn't even want to think about it one.more.second!

    I can say I have not had any side effects at all, other than the fact that I have been on a clean eating regimen and have started back to my Jazzercise classes 3-4 days a week which has been really great. I did have hot flashes before very infrequently and have not had any since I started Tamoxifen.  I do not have periods because at 32 I had a hysterectomy leaving me with tubes and ovaries only.  So I do not have any reports on cycle changes.

    I am in Canada and we get our Tamoxifen directly through the Cancer Agency.  I asked them today about the Watson brand and the pharmacist had no record of that brand name here in Canada. 

    The reason I wanted to know about the Watson brand is it sounds like that is the brand that most are losing weight while they take it.

    If anyone has anymore insight into the weight loss side while being on Tamoxifen please let me know.

    Carla

  • peggy_j
    peggy_j Member Posts: 89
    Options

    I've been on tamox about two years. Weirdly, one positive side effect is that my thin hair is now thicker.  My hairdresser said other clients have seen their hair texture change due to changes in hormones (going through puberty, pregnancy, meno, etc).  It was, however, unpredictable. Curly hair went straight; flat hair became somewhat curlier.  I googled and sure enough there are estrogen receptors on our hair follicles. So it seems possible that women could lose their hair too, on tamox, as some members have mentioned here. Even though it's nice to no longer have the straightest hair in the world, I do not recommend taking this just to improve your hair. ;)

  • Youngwithbc
    Youngwithbc Member Posts: 45
    Options

    Finally took the plunge and took my first pill after dreading it for a long time. Hoping I can share a positive experience in the near future... fingers crossed.

  • mamasixtaz
    mamasixtaz Member Posts: 156
    Options

    Youngwithbc-Good luck!  I have been taking Tamoxifen for now 2 months.  Few hot flashes at night is about all I have experienced.  Decreased appetite too resulting in weight loss, which I needed to do anyway.  Hope you keep taking it and give it a try, may not be anything to dread and helps keep us cancer free!

  • Youngwithbc
    Youngwithbc Member Posts: 45
    Options

    Yes, the cancer free part was definitely the incentive to get started, haha! A bit of a decreased appetite would be fine by me since I am usually hungry all the time. And I'm already on Effexor for the chemo-pause hot flashes, so hopefully it continues to work because the flashes stopped recently, which I think might be from the effexor. Who knows. Whatever happens, I know it will be a breeze compared to chemo, so that always helps me as a reminder that I can deal with anything :)