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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Tamoxifen side effects

Topic: Tamoxifen side effects

Forum: Hormonal Therapy - Before, During and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 16, 2009 03:14PM

Bono wrote:

First time on this site. 41 years old and on tamoxifen for almost 2 years. I have had all the classic side effects, hot flashes, vaginal dryness, pelvic pain and etc. I wanted to know if anyone has had any problem w/ a dry cough? I have been seeing my oncologist every 6 months and things seem  fine (counts are good, I feel good) but this cough just seem to stick w/me. I don't have wheezing or anything just feel like I have to clear my throat all the time. Anyone have this issue. Also, I have not gotten my period back. Anyone still not getting a period that is premen? Thanks,

Andrea Dx 1/25/2007, IDC, 2cm, Stage IIB, Grade 2, 3/27 nodes, ER+/PR+, HER2-
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Jul 16, 2009 04:53PM idaho wrote:

I have exactly the same thing-  I think estrogen must be a "lubricant" in our bodies- without we get dry everywhere-   including our throats.  I have a dry cough almost all the time - it started when I started taking tamoxifen.  Tami

There's no place like home......There's no place like home Dx 2/1/2009, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jul 16, 2009 05:00PM Bono wrote:

Thanks for the reply. I have been sweating this thing for several months and never really thought of it the way you describe. That makes me feel alot better.

Andrea Dx 1/25/2007, IDC, 2cm, Stage IIB, Grade 2, 3/27 nodes, ER+/PR+, HER2-
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Jul 16, 2009 07:23PM - edited Jul 16, 2009 07:25PM by rgiuff

Bono, I get a very mild dry cough thing sometimes too, It comes and goes.  It feels like I can't completely clear my throat sometimes, almost like my lungs don't have enough oomph to cough it up.  I get lots of other things that come and go too, like chest tightness that can go on for a few weeks at a time and aches that come and go. 

Idaho, tamox doesn't take away estrogen from everywhere, is supposed to just block it from the breast cancer cells.  However, having said that, I also think that it must be blocking it from other areas too, so many women get the dry vagina and the bone aches.  I used to have vaginal dryness, but when I started on tamoxifen, also started taking flaxseeds around the same time for the Omega 3s, and the tamoxifen gave me vag discharge, so with that combo, no more dryness there.

  I'm very concerned about keeping my skin and hair looking good, will not allow a medication to rob me of that, so I will keep taking plenty of fruits and veggies and anything with omega 3s and beneficial oils, as well as a multivitamin that's good for hair, skin, and nails.  And so far, so good, haven't seen any skin or hair changes,.

RoseG Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- Dx 4/6/2008, IDC, Left, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/19/2008 Lumpectomy: Left Radiation Therapy 8/19/2008 Breast
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Jul 17, 2009 07:36AM Bono wrote:

Thanks for responding, I too have notice some things that seem to come and go. I would agree that it seems that I can not clear my throat all the way. Also, thanks for the heads up about the flaxseed. My sister in law has suggested I try that too, but I was afraid to add that and keep forgetting to ask the onco. when I see him if it would react. May I ask what multivitamin you are taking? I eat very well, lots of fruit and veggies, lean meats and all, but have not added any vitamins and have been considering it for some time. I appreciate the advice and I am glad I found this forum. Thanks again.

Andrea Dx 1/25/2007, IDC, 2cm, Stage IIB, Grade 2, 3/27 nodes, ER+/PR+, HER2-
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Jul 17, 2009 02:36PM kle wrote:

Rgiuff- I can't seem to get a straight answer on this..Tamoxifen and flaxseed are ok together?

kle

Dx 7/24/2008, DCIS, Right, Stage 0, 0/2 nodes, ER+/PR+, HER2- Dx 7/1/2016, DCIS, Left, Stage 0, 0/1 nodes
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Jul 17, 2009 03:49PM hopefor30 wrote:

I had read that tamoxifen and flax seed are not OK or at least questionable -- I personally am staying away from flaxseed and soy.

M.

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Jul 18, 2009 07:01PM Lynnez wrote:

Hello to you all. I am just about to start taking Tamoxifen and i have been so worried about all of the side effects. It sounds like eating well and exercise are the secrets to maybe keeping the weight off, but i guess we are all different. If anyone is taking certain supplements i would really appreciate any info. Im sitting on the fence with this drug i have to say.

Lynnez
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Jul 18, 2009 07:10PM HelenaJ wrote:

Lynnez - I haven't put on any weight at all from Tamoxifen (just over 4 months now) however do carry my weight differently.  I still don't blame tamoxifen as I think this is because of what I have been through the last 9 months or so (3 surgeries and recovery time) that my lifestyle has changed dramatically since b4 bc.  I don't take any supplements at all but just try and eat well and when I am able to run again then keep up the exercise.  Exercise is such a good "upper" for mental health.

Hope you have a smooth ride with Tamoxifen.

Such is life! Invasive Papillary Carcinoma, ITC's, Oncotype score 6 Dx 10/28/2008, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 19, 2009 08:55AM penguin1 wrote:

Hi LynneZ-

I too just started taking Tamoxifin- well, about a month ago- and, I have to say, not one side effect so far!  I keep waiting because we read so much on this site plus in books.  It seems to me that if science came up with a drug to help our bodies battle cancer, why not take advantage?  I'm not big on supplements, but I agree on the good diet and excercise like HelenaJ.  Let 's hope for the best!

Dx 4/11/2013, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+
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Jul 20, 2009 10:19PM rgiuff wrote:

KLE,  I too have read many conflicting things about flaxseed, but would have to say much more good than bad things regarding estrogen + breast cancer., and my Onc said it was fine, but advised me to go lightly on the soy, which I've also read good and bad about.   At a conference I went to where Natural and Alternative therapies were discussed, they stated that flax is  beneficial because, being an Omega 3 fat,  it crowds out the bad fats and also the fact that it's a plant estrogen, these are good, because they crowd out the bad estrogens in our blood.  I know that this view is very controversial however.

  In any case, flax is a great source of fiber, which is needed to bind to the estrogen in our intestines to get it out of our bodies, as well as of Omega 3, good for the cardiovascular system, hair, and skin, and I believe also helps keep the vagina lubricated, so for me, I can't see it as something to stay away from..

Heart disease and strokes run in my family, so I have to think about these too, not just about breast cancer reoccurring.   To me, any of these happening would be worse.

RoseG Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- Dx 4/6/2008, IDC, Left, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/19/2008 Lumpectomy: Left Radiation Therapy 8/19/2008 Breast
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Jul 29, 2009 12:55PM talia73 wrote:

My doctor is also recommending tamoxifen. I ended up having a double mastectomy in order to not have to worry about future tumors. I got lucky as I do not have to have chemo nor radiation. Both tumors were very small, my numbers were great, and my lymphnodes were clear. They took out 3? So I am wondering if I REALLY need to start taking this and deal w/ the symptoms for 5 years.

 I REALLY am not looking at this in a positive manner. I am 36. The research I have found is against it's use. I know it is supposed to be preventitive for possible future cancer, but I am not sure I am up for possibly becoming losing my fertility, bone loss, etc.

Has anyone had a positive reaction? Or at least nothing horrible with this medication? I worry about being on it and the effects it could have on becoming pregnant and living a normal life after 5 YEARS of this medication. Has anyone only used it for a shorter time?

 Does anyone know a person who DIDN'T take it and is still doing good?

 ANY input would be great!

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Jul 29, 2009 04:32PM HelenaJ wrote:

Hi Talia - the purpose of hormone therapy is to get any of the cancer cells which may have made their way into your system - lung, brain, bone etc.  I too was node negative and have a good prognosis but thought I would give Tamoxifen a try as its proven record for beating recurrence is very good and especially as I did not do chemo or radiation as well.  As far as side fx goes well I'm posting because I am one of those who has virtually no side fx, just a bit of anxiety (but I had PMS pre bc) and dry eyes.  No hot flashes, no joint pain, no night sweats, no sleep deprivation.  As for bone loss and fertility - tamoxifen actually is a promoter of good bone density and it is also a fertility drug.  You aren't supposed to fall pregnant on it however so you need to speak to your Oncologist about that.

I have only been taking it for 5 months but so far so good.  I also have a friend who had no trouble for the entire 5 years and another lady (who is taking it post menopausal) who has no side fx except for a little weight gain. 

Everyone is different and sure there are a lot of women posting here with problems but that's what people come here for, empathy, ideas, cyber hugs, a safe whinge and also hope. Give it a try, you might be pleasantly suprised like me.  :)

big hugs

Helena

Such is life! Invasive Papillary Carcinoma, ITC's, Oncotype score 6 Dx 10/28/2008, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jul 29, 2009 04:43PM rgiuff wrote:

Talia, how much the tamoxifen will reduce your risk depends a lot on the characteristics of your cancer.  Very small tumors and negative nodes are both great for reducing your risk of reoccurance.  Also good would be grade 1(well differentiated) which is the least aggressive type. Did you have DCIS or was it invasive?  I know many women with DCIS who were given a choice as to whether or not they wanted to take tamoxifen, as many doctors feels that this may only be a precancer and may never actually become invasive.  And if they got good margins around the tumor, that would also be good.  So having had DCIS would also be better than IDC.

If all your stats were positive and you are ready to try  to get pregnant, I really would talk to your Med Onc and Gyn and stress this.  Maybe an agreement can be made to forgo the tamoxifen for now, because once you are on it, it's not advised to become pregnant .  They advise being off of it for a certain time period to get it out of your system before conceiving.  I've also heard about some women who with their doctor's blessing do only 2 yrs of tamoxifen and then take a break to try and get pregnant, and then later go back on it.

If you go to the Alternative, Complementary, and Holistic forum, there are many women on there who are not taking any antihormonal therapy and are doing other things instead to reduce their risk.  Also, there is a forum called Young Women with Breast Cancer and in some of the threads on that one, pregnancy is discussed.

RoseG Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- Dx 4/6/2008, IDC, Left, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/19/2008 Lumpectomy: Left Radiation Therapy 8/19/2008 Breast
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Jul 29, 2009 10:55PM talia73 wrote:

Helena and Rose

 THANK YOU SO very much for the input! I feel quite a bit more at ease as I have been trying to find someone who has been on it. I would have to go off birth control, but I can live w/ that. I have just been researching the med for awhile and it has been confusing on what to believe. I am very open-minded to taking it, if I don't like it, I am more than happy to state so. :) It just really helps to hear, from someone who is taking the treatment, something positive. I am heading back in to my Onco to discuss this with her.

The risk would be reduced by 6% by taking Tamoxifen - so I am not sure it is worth it for 5 years. I forgot all my "other stats", but my numbers when discussing chemo were really good when they needed and low when they needed.

 Again, thank you both so very much for the input! It definitely puts a different view of it and something to counter balance w/ studies, etc.

I hope you both are doing so very well and it is wonderful to "meet" you. :)

Live well!

Natalie

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Jul 29, 2009 11:06PM honeygirl wrote:

Hi bono , Just to chime in , I have been on tamox for 2yrs. Side effects for me are hot , sweaty flashes , wieght gain , joint aches , vaginal dryness , lack of sex drive , dry cough , mental confusion , and I have had my hormones checked and I am not menopausal. Good luck to you. I see my onc every four months. So far test are good. I am 52.

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Aug 2, 2009 03:28PM bwinn wrote:

Hi,

 I have been on tamoxifen for 7 months.  The pain in my left hip, the side I sleep on, is so intense that it wakes me at night.  Has anyone heard of this symptom?  I have dealt with the hot flashes, sweats, etc. but this one is new to me.

Thank you for your input.

Dx 5/15/2009, ILC, 1cm, Stage IB, 3/14 nodes, ER+/PR+, HER2-
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Aug 2, 2009 03:34PM hrf wrote:

If you are ES+, you need to be careful of the flaxseed as it mimcs estrpgen in the body. I was told that for ES+ women the maximum flaxseed is 1 tsp per day but you should check with your onc first.

BRCA2+ first dx in Oct. 2004 2nd dx Feb. 2009 a new primary
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Aug 2, 2009 05:19PM - edited Aug 2, 2009 05:20PM by rgiuff

Bwinn, I did 7 months of tamoxifen also, with aches that seemed to travel around my body, always in a new location where they would stay for a few weeks then move on.  The latest for me was also a deep ache in my right hip, kind of like what I had while I was pregnant with my 3rd child.  It was really getting annoying too.  I continuously have had joint pain to my right knee and my neck always aches. 

I've been off the tamoxifen for about a month now, taking a break from it, and the pains have all diminished, except for the right knee, guess that's permanent arthritis maybe.  The hot flashes, which really were getting unbearable to me in this summer heat,  have also diminished and some of the sex drive has come back, so I know now for sure what was caused by tamoxifen and what was probably occuring anyway with or without it.  I'm now trying to decide whether to go back on it or not. 

RoseG Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2- Dx 4/6/2008, IDC, Left, <1cm, Stage IB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/19/2008 Lumpectomy: Left Radiation Therapy 8/19/2008 Breast
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Aug 2, 2009 07:41PM Bono wrote:

rgiuff, I was reading your lastest post and was thankful that you mentioned neck pain. I have been on vacation and during it I developed a terrible jaw and neck pain on the side of my mastectomy. I thought maybe it was from casting my fishing pole too much, but it has only gotten worse within the last few days. Does anyone take any OTC other than tylenol or motrin that seems to work? Just was wondering if anyone had any luck with any type of pain killers that are easy on the system? I do not like to take pills and can get quite queasy from them, so any suggestions would be appreciated. Thanks.

Andrea Dx 1/25/2007, IDC, 2cm, Stage IIB, Grade 2, 3/27 nodes, ER+/PR+, HER2-
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Aug 6, 2009 08:37PM colleen1960 wrote:

I have been on Tamoxifen since April.  I didn't really have any side effects beside the occasional hot flash until this past month.  Has anyone experienced pain in there feet? Someone told me it may be the drug and others told me it may be a lasting se from chemo. When I get up after sitting or even before I get up I get some shooting pain in my feet.  It is not constant and sometimes it goes away as fast as hit comes.  But yesterday it was really bad and much better today.  Please let me know.

Thanks,

Colleen

Dx 10/17/2008, IDC, 2cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Aug 6, 2009 08:46PM awb wrote:

colleen-----I have foot pain (especially when I first get up on my feet in the am until I get moving around or when I've been sitting a long time) which I used to think was from the tamox (along with all my other aches and pains), but now think it is from my lack of estrogen from my surgical menopause--estrogen lubricates the joints, so there's stiffness and achiness without it. Oncologist and gyn both keep telling me this; I finished my 5 years of tamox last fall and  still had achiness even without it.

anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Sep 27, 2016 07:38PM Jo1961 wrote:

I have been taking Tamoxifen since 2013 and for over a year now I have had this dry cough where I cannot clear it and it has worried me. Now that I have seen these posts I will let my oncologist know. The cough is so bad it keeps me awake at night, its like a tickle in my throat.

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Sep 27, 2016 09:05PM Moderators wrote:

Jo1961-

We agree about speaking to your oncologist about this! It's always a good idea to bring any persistent side effects to the attention of your medical team. We hope all is well!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 13, 2016 11:23PM viktoryak wrote:

Hi. I am new to this group. I started Tamoxifen 3 days ago. Today i have a really bad shooting headache on one side of the head. Can it be from it? Also I am so terrified of weight gain.. I eat right and exersise. I even lost my last extra 5lbs after chemo. All due to diet change after diagnosis. I just hope it will not come back.

As for lock of libido and vaginal dryness is there any way to avoid it... I am so not ready for menapause...

Stage I. Lapmectomy 03/10/16.Chemotherapy started 05/03/16( 12 weeks of weekly Taxol), Herceptin started 05/03/16, Radiation 08/22/16
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Dec 7, 2016 08:11PM adoxa wrote:

just new at the forum, started on Tamoifen around the same time. Also have had headaches, in one spot, also sore to touch. Came to the forum to see about a dry persistent cough, have had that now for five weeks

Dx 6/23/2016, ILC, Left, Grade 2, ER+ Surgery Lumpectomy: Left
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Feb 16, 2017 04:20PM - edited Feb 16, 2017 04:20PM by crisw

Adoxa- I started on tamoxifen about the same time as you, after DCing exemestane due to side effects. I also developed the dry cough about a week ago and was concerned; glad to read the responses here that it may just be normal! I'll still bring it up to my onc if it's still around when I see him in a couple of weeks; he's been very responsive.

Dx 12/24/2015, IDC, Right, <1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Targeted Therapy 1/10/2016 Herceptin (trastuzumab) Chemotherapy 1/10/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/25/2016 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 7/5/2016 Whole-breast: Breast Hormonal Therapy 8/16/2016 Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 2, 2017 08:08PM 1116lucky wrote:

do you have acid reflux? The dry cough and throat clearing are symptoms

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