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Bottle o Tamoxifen

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Comments

  • lala1
    lala1 Member Posts: 974
    edited February 2015

    My gyn said to stop Tamoxifen for 2 weeks before and 1 week after and my MO said to stop for 1 week before and 1 week after. Just to be on the safe side and also because I wanted to experiment with my various supplements OFF Tamoxifen, I stopped it 2 weeks before and resumed 1 week after. And yes, you need to stop for risk of blood clots as well as most other supplements. The only thing I continued up to surgery was Vit D and magnesium. The magnesium really helps keep my bowels moving regularly which is a great bonus after anesthesia! I was totally back to normal by day 3 after my hysterectomy! Tell your docs EVERYTHING you take including things like melatonin or flaxseed.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015


    Hi, Thanks Lala for the answer.

    I heard back from the MO nurse and he said to stop one week before surgery and for one month after and then to see him as he will switch my meds.  Do I really need to go on a diff medicine even though I will be technically in menopause?  I have had minimal side effects from Tamoxifen and with no uterus and ovaries that risk is eliminate. UFFFF...

    Still waiting to see when surgery is, they said it would be on or before March 3. If I do not hear from them by tomorrow I will call and ask. I need to arrange time off from work etc, so  little notice would be nice..

  • tangandchris
    tangandchris Member Posts: 934
    edited February 2015

    Just wondering if anyone has nausea related to taking Tamoxifen? The last week and a half I have woken up and felt extremely nauseas, to the point of having to stand over the kitchen trash and wretch. I haven't actually vomited, but I think it's mostly because my stomach is empty. It's very strange, almost feels like morning sickness. Anyone have this?

  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015

    HI, I had nausea very bad the first month or so after I started taking Tamoxifen and like you felt I wanted to vomit.

    After about a month it got better and I do not have any problems with that now. 

  • chipmunk57
    chipmunk57 Member Posts: 28
    edited February 2015

    Yes, terrible nausea and no appetite. Lost 10 lbs the first 3 months. It has improved somewhat , my weight has stabilized but I haven't put any back on. Taking the pill late in the day seems to help a little .

  • tangandchris
    tangandchris Member Posts: 934
    edited February 2015

    I've been on it since November on and off, but this is the first month of a new brand. I haven't lost any weight, that wouldn't be a bad thing :) But, I have noticed appetite is off and the nausea thing. I have reflux too. uggg

  • lala1
    lala1 Member Posts: 974
    edited February 2015

    ndgrrl---When I saw my MO last Sept, I told him that it looked like a hysterectomy was in my future. I asked if I needed to go on the AIs once I had the surgery. He said no, that if you are started on Tamoxifen, docs prefer you stay on it for 5 years even if you become menopausal in that time. Then at 5 years you may be switched or if you prefer you can stay on it. I do very well on Tamoxifen with very few SEs and since it helps with bone density and I'm now in menopause due to my hysterectomy, I'm planning on staying on it as long as I can. The AIs are supposed to help reduce your recurrence risk even further but they also cause more bone and joint pain than Tamoxifen so that's another reason to put them off as long as possible. Many MOs have different opinions on this and I know at some point this was discussed on here somewhere. But the GENERAL rule of thumb is once you start Tamoxifen you stay on it for a full 5 years even if you become menopausal while on it. My MO said as long as I'm doing well on it, he'll let me stay on it.

    Also, just as a side note, I've been on Tamoxifen for 2 years. At the end of the first year, I started getting pretty nauseous and dizzy with bloating and it's been going on for a full year. Now that I'm 3 weeks out from a total hysterectomy, I find my nausea, bloating and dizziness gone! I've read alot of article that say these things can be caused by ovarian cysts and fibroids and we all know that Tamoxifen tends to promote these things. May be just a coincidence, but all I know is I feel the best I've felt in a year! And I'm recovering from surgery and still feel better. All the more reason to get those ultrasounds!

  • daisylover
    daisylover Member Posts: 173
    edited February 2015

    I have mild nausea most days. It is unusual because it goes away when I eat - much like when I was pregnant. I sometimes need to snack on nuts. Thankfully, mine is not intense enough to make me retch. Hope that this will resolve for you, TangandChris.

  • tangandchris
    tangandchris Member Posts: 934
    edited February 2015

    Woke up again and had the same feeling, retched and had a terrible headache. I swear if I didn't know better I'd say I was pregnant!

    I decided to not take Tamoxifen today. I have felt crappy most of the day, but as of about an hour ago I'm feeling semi normal. I only say semi because I'm not even sure what normal is anymore.

    I may not take it for a few days and see how it goes again. Idk, I'm just tired of this stuff. I'm waiting on BRACA testing results too. It doesn't look like I will be positive, but hey you never know right? Its nagging in the back of my mind...what if, what if??

    It just seems like a lot of days are wrapped up in BC something or another. This ride just never ends does it?

  • tangandchris
    tangandchris Member Posts: 934
    edited February 2015

    Ohhhh the irony!!

    So I just checked my phone and I missed a call from the genetic counselor. She said results are back, I tried calling her back but she is gone for the day. sheeeeeesh! Is it a bad sign that she did say yes or no on the message. Couldn't she have said, the results are negative, if you have any questions call me back?

  • jennie93
    jennie93 Member Posts: 263
    edited February 2015

    My experience with genetic counselor is, they will never tell you anything over the phone, good or bad.

  • Carynbrit
    Carynbrit Member Posts: 6
    edited February 2015

    Joining this thread..had the 'talk' today.. had a binder full of questions..yes i've been lurking and reading all the threads for months now..

    seems like im at least going to try the tamoxifen..then have the go ahead to stop if get SE (nurse knows me and my life quality concerns)... if okay dokey on it.. then will continue.

    What got me though...is the insistance that' hardly anyone' gets SE from this stuff...do they plug their ears when people are talking?


  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015

    Waiting on those test results are nerve racking.!!!  Mine would call and say the test results were back but couldn't meet with me for nearly a month. I finally got her to tell me they were ok on the  phone cause another month and I would have been out of my mind!!

  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015


    Carynbrit,

     My MO also said there was going to be no side effects and nonchalantly handed me the prescription. Imagine my surprise when I got a list of side effects from the drug store and learned a whole lot from this site. I just swear that the doctors choose to ignore things because that way nothing has to be charted.  GRRRRR.. It all just makes me so mad!!

  • Carynbrit
    Carynbrit Member Posts: 6
    edited February 2015

    I had a full physcial by my regular dr today. .blood work/pap and all that.. she was on the tamoxifen train but did say she see's women ALL THE TIME who suffer with this drug..i said good.. because you know me now (as in she has rarely seen me in all the years I've been with her) and you'd better be ready to listen when I come in complaining.

    Picked up my tamoxifen bottle from the pharmacist (i said 'one bottle of poison please when asking for it).. who also knows me.. we ran through the list of side effects... right there and then at the counter... Mylan brand... paid 0 for it.. (i dunno why this peed me off..maybe im just generally angry the last few days) ..then i hauled my ass to the health food store.

    One bottle sitting on the counter here at home and Im still wondering....

  • Carynbrit
    Carynbrit Member Posts: 6
    edited February 2015

    oh (yes here i go again)..as far as dr's not charting it....it seems to easy to put it down to other stuff... for example the fake menopuase we will be put through.... common regular menopause has some of those issues (joint/eyes/ flashes/sexual disfunction etc) so its written off as 'probably would of happened anyway'...

    My nephew works in research in the pharma drug companies.. he reserached this drug for me..and what else is out there etc.. blah blah blah..he wasn't very encouraging on what he knew (and then he ran all my numbers too)....but it all came down to' it's you call...its a big risk either way..


    sigh

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited February 2015

    Here's a possible crazy question. Can Tamoxifen cause constant congestion? I've had sinus trouble all my life but I can't remember ever having constant thick congestion for 6+ weeks straight even after being on a strong antibiotic for the underlying infection. I thought it was just the winter weather but this all started when I began taking the Tamox. SE or not it's making me miserable and I'm going to have to buy stock in Puffs before much longer.

    Scottie

  • lala1
    lala1 Member Posts: 974
    edited February 2015

    Scottiemom11--I was told by my MO and also read a few artlicles stating that Tamoxifen can "increase allergy symptoms". Basically if you're already prone to allergies or sinus issues, Tamoxifen can make them worse. And one article I read said it can even cause these symptoms if you haven't had them before.

  • daisylover
    daisylover Member Posts: 173
    edited February 2015

    Lala - Thanks for that! I never knew that there was a recognized connection between Tamox and allergies. I had to take a 2 week vacation within my first 2 months due to swollen eyes and lips. My oncologist felt that I had developed seasonal allergies - did not want me to involve an allergist, though ("They just slow things down."). After the 2 weeks off, it settled down. Very interesting!

  • katcar0001
    katcar0001 Member Posts: 321
    edited February 2015

    I know about allergies! I have suffered with them all my life. But no problems with Tamoxifen. I was so against taking it, but then I read the entire How old were you when diagnosed, thread and then I ran and took the pill. That thread through me into such a depressed state. Anyway, I have not missed a pill since starting and do not plan to stop unless I get weird problems downstairs. And... no side effects other than drier than the Gobi. Of course, I am older and maybe somehow I skipped menopause going from HRT to Tamoxifen, but I feel great. And while I wake up drenched at night at times, I welcome that. To me it is a sign of declining estrogen which I want! Maybe try a different brand? I have tried two now, both good. One I get in Mexico--Taxus and the other one at CVS--Teva.

  • MagicalBean
    MagicalBean Member Posts: 192
    edited February 2015

    How odd. I have allergies and usually need daily meds. Since being on Tamoxifen I have been much less congested.

  • Mommato3
    Mommato3 Member Posts: 468
    edited February 2015

    I have had a lot of nasalcongestion too. I've been blaming it on Herceptin but maybe it is the Tamox.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited February 2015

    Thanks all. I will ask MO at next appointment if still having trouble. My allergies are more fall/ winter based, so if they continue into spring then something is up. Not bad enough to stop Tamox but maybe switching brands is a good idea. I get almost all script from Sam's Club so never asked about the particular brand.

    Scottie

  • misspinky
    misspinky Member Posts: 12
    edited February 2015

    Been away from site, just saw my onc. said I was in good shape, last Mamo and ultrasound was clear. Been on Tami now 2 years doc said had to take it for 5 years. I was through menopause when I started, was allergic to Arimidex. Have very few SE, lots of sticky drainage enough to wear a pad. Doc says normal taking Tami. Few night sweats and reflux. Biggest SE is I'm so tired. I have hard time getting to sleep, then sleep 9-10 hours. I take so much medicine I'm not sure which causes what. I take diabetic meds, platelet pill, allergy meds, hbp, high cholesterol, so anyone could be a problem. New mamo and ultrasound in May. I'm 76 so I just take each day as it is.

    Best wishes to you all!

  • lala1
    lala1 Member Posts: 974
    edited February 2015

    So apparently I've found a PLUS to Tamoxifen!! Now that I've been tossed into surgical menopause due to total hysterectomy, my gyn was listing some menopause issues to watch for and mentioned vaginal dryness and how problematic it could be. When I told him I didn't have to worry about that cause Tamoxifen causes drainage for me, he fist pumped the air and said "Yes!! We've finally found a good side effect of Tamoxifen!" My doc is always trying to help me find the positives in this journey. I love my doc..... :)

  • ndgrrl
    ndgrrl Member Posts: 645
    edited February 2015

    I have surgery to remove my ovaries and a hernia on March 3.  My Oncologist told me to stop Tami a week before surgery and stay off it a month after and then see him as he wants to switch me to a AI at that time. I wonder why?  I didn't see him as I only talked to his nurse on the phone to ask him if I needed to stop Tami before surgery and that was his suggestion.

    I am only 46 so not sure why he wants to switch me, I had heard of woman who are post menopausal staying on Tami. The side effects now that I am on Effexor are not bad and I really don't want to add joint pain and desert dryness to the mix.  UFFF.. doctors how do we know who to believe? 

    I am happy to have this new fill in Oncologist as my old one told me the ovarian pain I was feeling was all in my head because Tami stopped ovulation. WELL WRONG!! I odviously have been ovulating and the pain was real!!  The new subbing in Oncologist is 75 so been at it quite awhile. Just hope he knows what he is doing. It is so hard to trust again!!


     

  • lala1
    lala1 Member Posts: 974
    edited February 2015

    ndgrrl---I went through the same issue with my MO. He said the rule of thumb is that if you start on Tamoxifen as premenopausal you stay on it for 5 years even if you become post menopausal during that time. Then at the end of the 5 years you can stay another 5 years on Tamoxifen or you can swap to the AIs for 5 years. However there are exceptions. For example, let's say you're premeno and on Tamoxifen and you have horrible SEs. You could have a hysterectomy (or oopherectomy or meds) to put you into menopause, and then swap to the AIs to see if you do better on them. On the flip side, maybe your postmeno taking AIs and doing terrible on them. You could take Tamoxifen instead which might be easier on your body. Women who are premeno can't take AIs as I sure you are aware. However women who are postmeno can take either. Now, the AIs are actually more effective as preventing a recurrence but they come with their own set of SEs too. I do very well on Tamoxifen so my MO said I would stay on it for 5 years (I am just into year 2) then he would reevaluate whether to swap me. But he said because 1) I do so well on it and 2)Tamoxifen helps keep bones strong, and 3) AIs encourage bone loss, and 4) I am now menopausal which leads to bone loss, that he would probably try to keep me on Tamoxifen for the full 10 years. Worst case, he'd swap me at 5 years, see how I did with SEs or bone loss, and be able to swap back if I prefer.

    This is the chart my BS wrote out for me the very first consultation I had with him. I've used it many times to make decisions.

    Tamoxifen SEs:

    Good: increase survival 12%, lower recurrence risk 50% on mastectomy side, lower BC risk on remaining side 50%, protects bones

    Bad: hot flashes, increased risk of cateracts, doubles risk of uterine cancer, increased risk of blood clots

    AI SEs:

    Good: increase survival 12%, lowers recurrence risk by 56% on mastectomy side, lower BC risk on remaining side 60%, no increase of cateracts or blood clots

    Bad: hot flashes, doubles risk of uterine cancer, causes bone loss, causes joint aches


    Now one thing I noticed from this list is that he doesn't show joint pain on Tamoxifen which is actually my one major SE. However I've learned to manage that very well so I figure going on an AI might make it unmanageable. Also, note that a hysterectomy/BSO reduces your BC recurrence risk by 50% so I figure that can only help. But just because you will be postmenopausal, it doesn't mean you HAVE to swap to an AI. Be sure to get all the pros and cons and if necessary, a second opinion. I don't take anything my docs say anymore at face value. I research and get second opinions on everything. I LOVE LOVE LOVE all my docs but that doesn't mean I think they know everything! I got 2nd opinions before my mastectomy AND my hysterectomy.

    Also, my docs initially told me to stop Tamoxifen for 2 weeks before and 2 weeks after but then once I had surgery and went home, they said restart Tamoxifen after 1 week....maybe cause I recovered so quickly? Who knows!! The reason behind stopping is because of the blood clot risk. Ask your GYN and your BS and your MO and then average all their opinions! :)

    Hope this helps.

  • Professor50
    Professor50 Member Posts: 86
    edited February 2015

    I had radiation and tamoxifen at the same time so I never know which to attribute what to. BUT. I totally get the "feels like I was pregnant" thing about being nauseated and needing to eat. I found that during rads (and this would be also tamox second month) if I was hungry I had to eat or I would feel really nauseated. (very much/exactly like when I was pregnant).

  • daisylover
    daisylover Member Posts: 173
    edited February 2015

    I experience nausea daily - when I eat it goes away. Originally, I thought that it was caused by the trial drug that I was taking, but I finished that and still have nausea... It feels like pregnancy for me.

  • tangandchris
    tangandchris Member Posts: 934
    edited February 2015

    I stopped taking mine for a few days to see if that made a difference....and it did. I'm back to taking it again and haven't felt nausea, this is after 3 days. I hope it stays this way. Have I ever mentioned that I really dislike this drug??

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