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Tamoxifen for gals who have not had chemo

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I was following a long thread on Tamoxifene and while it was informative and interesting most people on it had chemo beforehand.  They were often not sure whether their side effects were related to Tamoxifen as many of them started happening during chemo.  I was hoping to start a similar thread for people who have had surgery and rads but no chemo.  I have just finshed rads and am about to start Tamoxifen (having said that I am avoiding making that appointment).  Any experiences and/or advice would be much appreciated.  Best wishes  Nena

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Comments

  • icandothis
    icandothis Member Posts: 70
    edited September 2008
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    Tamoxifen isn't all that bad - my gynecologist says that many of her patients actually like it -

    it helps bones, keeps cholesterol down, and, for some women, actually suppresses appetite!

    You might be interested in this thread.

    http://community.breastcancer.org/forum/78/topic/719142 

  • 2008bcsurvivor
    2008bcsurvivor Member Posts: 1
    edited September 2008
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    Good idea for the thread. 

     I have just been on half the dose for just over a month.  I will be going to the full dose in a couple of weeks.  I initially had some joint pain - it is much better if I exercise.  I also have noticed that I get a headache when have just one drink of alcohol.  Also my eyes feel a bit dry. Other than that so far so good.

    Don't hesitate any longer.  Make that appointment, you will likely do just fine.

  • PatMom
    PatMom Member Posts: 322
    edited September 2008
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    I've been on Tamoxifen since May.  My cholesterol reading went down 60 points in the first couple of months I was taking it.  I've noticed that the pain of any headache I get seems sharper, but the headaches are no more frequent.  I have hot flashes.  My eyes feel drier, and drinking enough water and eating plenty of fiber are important for preventing the most bothersome side effect. 

    The prevention and protection from the Tamoxifen is well worth the very minor side effects for me.

  • KAK
    KAK Member Posts: 297
    edited September 2008
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    Nena, thanks for starting this thread.  I'm in your same situation, lumpectomy, no chemo, have 6 more rads to go & then I start Tamoxifen.  It's really good to hear the positive feedback about everyone's experience with it.  I've just this year been slowly crawling out of the ditch of post-menopausal fatigue, night sweats, etc., etc., and I do NOT want to go back into it when I start Tamoxifen.  But I hear in general that those of us who've already finished menopause (I'm 54) do well with it.  We'll have to compare notes as we go along.

    Kathi

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited September 2008
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    Thank you all for  your contributions.  I will make that appointment tomorrow.  Please keep coming back here and share your experiences so that we can help each other cope.  Best

    Nena

  • jmfl
    jmfl Member Posts: 1
    edited September 2008
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    Hi Nena,

    I started Tamoxifen this week. I did not have chemo or rads. I do get kind of a weird drugged feeling when I take it but that is most likely due to a general sensitivity to drugs. I am hoping I will build up a tolerance. So far no other side effects.

    My onc said there is no harm in trying it and just seeing how you do on it. You can always decide to come off of it if you have problems. The majority of women who take it have minimal or no side effects. You hear mostly about the women who do have side effects and need help managing them but they are the minority (according to my onc). This seemed like a reasonable approach to me so I am trying it. 

    Julie

  • Skye64
    Skye64 Member Posts: 6
    edited September 2008
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    hi all, I am new here, I got my diagnosis in June. I got a lumpectomie and now I have 8 mor rad to go . I tried Tamoxifen 3 times during radiation. I have a lot of hot flushes , cannot sleep and the worst thing is I got nausea the whole day...I am not myself anymore..So I stopped it....the stomach problem is still there, like heartburns and stomack upset...the nausea is better. I will try it again after finishing with radiation...The onc. told me that is the only medication I can take , cause I am premenopaused (44). So I am really afraid to take it again.........

  • flamcake
    flamcake Member Posts: 1
    edited September 2008
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    Anyone taking just the femmara or arimidex and radiation vs the tamoxifen,    I am still debating what to do.   Did any of your doctors recommend chemo and you said no.

  • Skye64
    Skye64 Member Posts: 6
    edited September 2008
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    I did the oncotype dx test.. I got score: 12.

     So the onc did not recommend chemo.

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited September 2008
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    I was told I don't need chemo but noticed that some women who had similar diagnosis had it.  Not sure why.  Skye64 there is a contraversy about taking Tamoxifen during rads, some doctors think it is OK others that it is not so maybe it is a good thing you stopped.  I am also pre-menopausal (although turned 48 between the surgery and rads so it cannot be that far off).  I am scared of some side effects mentioned on other threads like 'foggy brain', total lack of sexual desire and/or pain when attempting sex, painful joints, insomnia, depression to name but a few.  This is a really strange illness when it is the treatment which makes us feel ill.  Until I found out about my tumour I was full of beans and led a very active life.  It is so hard to let go of that.

  • Skye64
    Skye64 Member Posts: 6
    edited September 2008
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    I really can understand you...till my diagnosis I was so activ. I was a runner , from 5 k to marathon. Now I am not able to run...just do some exercise on the the elypticaltrainer.I have no power anymore. And with the Tamoxifen I felt soooooooooo sick........I do not know what to do now. The onc. wants to  give me some medication against the nausea....but when I was on that drug, I had depression , always crying...since I stopped I am normal like before......

    I think I would like to make an appointment with my gyn and talking about taking the ovarias out, cause then I can take the other stuff like femara, arimidex or aromasin...

    I really do not know. I am so confused. I cannot believe that I got this illness, cause I was so healthy.....I feel so betrayed of my body...... Like I  said, I am a runner . 10 years now, no smoking, no alkohol, never...and now....It is not fair.

  • jpann39
    jpann39 Member Posts: 92
    edited September 2008
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    Nena & Skye

    Ive been on the tamox for 18 months now and have small side effects. I too was extremely active and found it hard to stay put, but I did it and now almost 2 yrs later Im basically back to almost as active as I was prior to my breast cancer diagnosis & treatment.

    I was 46, pre-meno. Choose only lumpectomy, radiation and hysterectomy as treatment options. Did the Oncotypedx testing and scored 12.

    I started the tamox twice a day at a 10 mg pill for each dose. I took it through rads, but it isnt really recommended because it can cause more severity in the burns is what my rad oncologist told me...it was purely by accident that I took it those 7 weeks though. It was in my file that I was taking it but I guess they didnt see it until about the 5th week, but since I didnt have trouble with burns he said to go ahead and continue. After my hysterectomy I tried the Arimidex, made it 4 months and changed back to the tamox as I felt like I was 90 yrs old on the Arimidex. When I changed back to the tamox the oncologist move me to the one dose of 20 mg per day and I take that at night just before bed.

    Good luck ladies

    Jule

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited October 2008
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    I know what you mean Skye.  My mother in law doesn't cook and eats only processed, convenience food.  At 74 she is not in perfect health but is, de facto, healthier than me who always ate fresh, cooked from scratch meals.  I cannot say that I was as active as you but was not inactive, doing everything that a life which involves working full time and looking after a family involves.  Still, we need to accept that it did happen and we now have to find a way to live as well as possible despite the cancer.  Thank you Jule for your helpful comment.  I got my prescription today and need to get the drug after work.  Can anyone advise me whether it matters what time of the month one starts with Tamoxifen.  I know I should have asked when I was visiting my GP but of course it didn't cross my mind then.  I am due my period and wonder whether I should wait until after it has started, perhaps in the same way as we would start contraceptive pill.  Any thoughts? Nena

  • awb
    awb Member Posts: 213
    edited October 2008
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    Nena--I've been taking tamox as a preventative  (high risk due to LCIS and family history) for nearly 5 years (finsih up in about 2 weeks!). The SEs, while annoying, have certainly been manageable. Some mild hot flashes, insomnia, and achiness.  I use melatonin to help me sleep and ibuprophen as needed. The way I look at it, I may have had similar symptoms with natural menopause anyway. (a lot of my  friends do).  I've never heard any mention of a good time of the month to start it.  None of my docs said anything about that, I just started it when I got it.

    Anne

  • san4850
    san4850 Member Posts: 2
    edited October 2008
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    I'm currently taking tamox, and I didn't go thru chemo, just a lumpectomy and radiation.  The only SE's I've experienced are hot flashes and irregular periods (I'm still premenopausal).

  • koshka1
    koshka1 Member Posts: 93
    edited October 2008
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    Hi there,,,

    Glad this thread was started...

    I started tamox in May....did not do chemo...they said tiny tumor and low grade..so benefit was too low....

    Anyway,,,the first time I tried tamox I took it for around a month and had a really hard time sleeping...don't know if it was just anxiety or if it was the tamoxifin.

    I stopped it for 2 weeks as I told my oncologist..."no way I am not gonna sleep for 5 years!"...he agreed.  So i tried it again 2 weeks later and dont have a problem.  I get mild hot flashes and have not had any night sweats....BUT,,,i sleep with the fan on and keep our bedroom cold (what can i say...sleep is important to me)...

    This past month,,,my period was 6 days later (never happened b4),,, and was really really light for a week or so...then it kicked in!!!,,and finally finished...darn it was 18 days of torture....

    Those so far are my only issues.....

    Geez,,,but better than the cancer returning...anything is better than that....

    Hugs to all of you!!

    Kosh

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited October 2008
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    Ouch, you got me there about avoidance.  I admit that.  But it did cross my mind that at certain time of the month we need different balance of hormones for all endometrium to shed and I though it might matter if I start just before my period.  Anyhow I am still carrying the prescription with me (stayed too late at work and all that).  I will file it tomorrow and start but will take advice from another post on this site and start it gradually at first.  I have just started a new job and cannot afford not to sleep.  Thank you all for your comments.  They help me navigate these dark waters.

  • wallycat
    wallycat Member Posts: 1,301
    edited October 2008
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    No chemo; tamoxifen for 1 year 4 months.

    Had no symptoms for almost 8 months and it made me so nervous I had the cyp2D6 genetic test done.  I'm an intermediate....about 10 months or so I started with night sweats...at 11 months, the day sweats/flashes began ---but it only happens if the room is warm or I get nervous.  I drink iced water and it cuts it back.

    I LOVE not having periods...another side effect as I was having periods regularly.

    My onco said only post menopausal women benefit from bone density using tamoxifen...premeno, there is bone loss.  Of course, this was before AI's for post meno, so not many post meno gals taking tamoxifen these days.

    My worst side effect is achilles heel pain....HORRIBLE.   I'm an avid exerciser and this has cut me to the quick.  Walking is PAINFUL.  I still do it, but am miserable rather than enjoying it.

  • wallycat
    wallycat Member Posts: 1,301
    edited October 2008
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    How could I forget to add....

    my lovely waist-line is fading.....   Hate the meno-belly Frown

  • wilsope
    wilsope Member Posts: 2
    edited October 2008
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    Thanks for this thread. There are very few people I know that went through what I did. Most had it much worse than me. double Mast, no chemo no rads. 1/2 strength tamox for 3 months then full. I am a month into it. I am 50 so night sweats and hot flashes were becoming a part of my life anyway. They do seem to happen now every night. I take it before bed because I find it makes me sleepy. No aches or pains. I had a hysto 13 years ago so I really have no idea how far into menopause I was before starting the pills. The other issue is I smoked from many years - only 5-7 a day, never more but never less. I quit 2 weeks ago using a drug called Champix. It too causes vivid dreams, night sweats. I have resigned myself to the fact that I will not have a good night sleep for another 5 years.  My oncologist said that my bc was caught very early, no nodes involved, so I have a 90% chance of it not coming back. He asked if I would run across the freeway if I had a 10% of getting killed? the tamox is supposed to decrease my chances of recurrence by another 5%. I will gladly loose a little sleep so that I don't loose any more body parts. For me there was never a question. I don't wan't it back!

  • codylynn
    codylynn Member Posts: 4
    edited October 2008
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    I have not had chemo, rads, or surgury - rads and surgury have not been offered; I have refused chemo.

    I took Tamox for about 18 months, then HAD to quit: depression was very severe, severe joint and muscle pain - mainly in the legs and hips - enough pain that I would just sit and cry, 30 pounds weight gain, nausea, my fingernails were falling apart, and sleep problems. I don't remember what else - other than I was totally miserable on a drug that according to my onc wasn't supposed to create all the problems I was having. 

    I'm currently on Aromasin - but take it once every 3 days as it seems to create havoc with my body also - although not near as severe as Tamox did.  Pain is severe for me, but at least I'm not depressed.

    I'm hoping I live long enough that something comes along that doesn't kill me before curing the cancer.

    I'm in my mid 50's, post meno, ER+/PR+, HER2-, have survived since 2001 w/ inflammatory BC.

  • Skye64
    Skye64 Member Posts: 6
    edited October 2008
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    hi all,

    I decided now to wait with the Tamox after I finished radiation, or better I need some  time to recover from the radiation, cause my stomack got so much upset, during the radiation. But I am almost done. 4 left. The doc. gave me Nexium and Xanax. Then I will go on vacation for a week and then I will try the Tamox again. But this will be the last try....if it will not work I have to think about some other possibilities. I am always looking for research if  a minimal dosis like 5 mg or 10 mg daily is adequate.

    Wish you all a good weekend

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited October 2008
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    Got the pills on Friday and still haven't started.  What is the matter with me?

  • BustersMom
    BustersMom Member Posts: 260
    edited October 2008
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    Hi everyone,

    I had a bilateral mastectomy/no chemo...  Been taking tamox for about a month now...    I'm  already experiencing insomnia, and my period was 5 days late (I used to be exactly 28 days).  And my skin is breaking out like crazy.

    So far - nothing intolerable. 

    If I start feeling awful - I've decided I will stop it, and look into naturally supressing my estrogen via diet (though I haven't drunk cow's milk in a couple of years & try to avoid hormones in food, etc)...  I would definitely get super vigilant about it.  And exercise more.. I've been a bit of a lazy bones.

    I'm 42 & premenopausal, very "regular" - no real perimenopausal symptoms to speak of prior to tx. 

    Curious to hear if others are experiencing "zits" like I am!!

    NenaH, it took me almost 2 months to get the courage to start.  Maybe start with 1/4 or 1/2 pill ?  that's what I did for a few days - just to show myself it wouldn't turn me into a monster overnight.  This stuff might save us from having cancer again. 

    Hugs - Busters Mom 

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited October 2008
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    Buster's Mum, thanks for your encouragement.  Part of the problem is that I aready suffer with some of the potential side effects of Tamoxifen and am worried that things will get worse.  For example I have policystic ovaries and one of the side effects is that Tamoxifen causes ovarian cysts.  Also I am a very light sleeper and worry whether I will be able to function if I sleep any less and so on.  Every time I read about someone having a recurrence I tell myself not to be so stupid and just start but it has not happened yet.  It is good to know that someone else had diffuculty starting.  Please keep us posted of how you are doing and if you have managed to get any help with your breakouts.

  • smorache
    smorache Member Posts: 1
    edited October 2008
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    Hi everyone,

    I'm thankful for a new Tamoxifen thread too.  I just started my Tamox. last Friday (Oct. 4) and my rads start on Oct. 21.  When I saw my surgeon for the post-op check, he said that the Tamox would start after the rads.  Then I saw the onc and he said you could start the Tamox right away.  Which is "right?"  Or does it really not matter?

  • Joyce-PA
    Joyce-PA Member Posts: 53
    edited October 2008
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    Hi!

     I started tamox after rads.

  • prayrv
    prayrv Member Posts: 362
    edited October 2008
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    I've been on tamoxifen for 1 year.  I started out with mild se's but now not so much.  They seemed to have tapered off after 3 months or so.  Just as Breast Cancer is different for everyone, so are the side effects.  I only hesitated one minute when I started taking my little white pill, I thought about why I was prescribed this medication and realized that I had to take it and see where I would be in a year.  Here I am one year later - 4 more to go!

    Gentle Hugs,

    Trish

  • koshka1
    koshka1 Member Posts: 93
    edited October 2008
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    hi there...

    i was told to start my tamox after the radiation was done.....

    not certain why....

    kosh

  • Kleenex
    Kleenex Member Posts: 310
    edited October 2008
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    Hi - I am not taking Tamoxifen yet, but I am headed that way. Lumpectomy, no chemo (oncotype of 11), currently doing radiation.

    My medical oncologist specifically said that we would wait at least two weeks after the end of radiation to start the Tamoxifen, because it can "cause some problems" when taken during radiation. I was fine with that, so I didn't ask what those problems might be. The plan appears to be for me to take it for five years and then perhaps take something else after that - Femara?

    I'm 45 and premenopausal, and I'm already having some hormonal fun because I was on BCP's for a long time and stopped them three days after my diagnosis in June (I finished the month). So now my poor body is freaking out, trying to remember how to run its own cycles. My three non-BCP cycles so far have all been exactly 28 days, so there's still some chemical influence (without BCP's, my cycle is more like 31 days). I have been enjoying breast tenderness (a treat with radiation), strange feelings of pelvic pressure around the time when I am ovulating, and a period that lingers randomly on and on.

    So perhaps Tamoxifen will be an improvement, if it actually brings on menopause rather than merely making things more random.

    NenaH - I had not heard that polycystic ovaries were a possible side effect of Tamox. My medical oncologist was very, very emphatic about the benefits of Tamoxifen for me with my super-hormonally receptive tumor. It allegedly will cut my theoretical risk of recurrence or new cancers that are hormonally receptive by 50%. (Another theory is that if your cancer is hormonally receptive, that's the type of cancer your body is most likely to make again.) Perhaps a talk with your medical oncologist might help. I find that I need to "buy in" to these treatments, so I basically ask my physicians to sell me on what they're offering...

    Coleen