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Any positive or "OK" experiences from Tamoxifen?

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Cyborg
Cyborg Member Posts: 192

It is pretty much a sure thing that I will be taking Tamoxifen after radiation. I hear a lot of negative things, but want to hear if there is anyone having or who has had an "OK" or positive response to this drug.

Thank You

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Comments

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2011
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    Cyborg, there are a lot of women who take Tamoxifen and have a very positive result with no SE's or very few but as in most things here, you don't always get those people posting unfortunately.  I have personally known quite a few women who have done their five years with out a single SE which always amazed me as I was one who is actually allergic to it.

    I hope your journey on it is a good one.

    Love n hugs.  Chrissy

  • mspradley
    mspradley Member Posts: 11
    edited June 2011
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    I've been on tamoxifen for ten months, and the only SE I have are mild hot flashes.

  • Rennasus
    Rennasus Member Posts: 642
    edited June 2011
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    Cyborg,

    The interesting thing about Tamox is that, for many women, the SEs end up working themselves out. For instance, I had really itchy skin for about 3 weeks, then my body adapted and it went away. Initially I had increased thirst & urination; those went away after the first week. Stuff like that. It's exactly how my Onco and my primary doc described it; that I may have SEs but they will resolve themselves in a few months.

    Hope that helps. Good luck to you! 

  • badger
    badger Member Posts: 24,938
    edited June 2011
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    Hi Cyborg, I started tamox last July, so have been on it nearly a year without bad SE's. 

    I do have hot flashes but that could be my age (I was 50 and in peri-menopause when I started chemo last March) and the after-effects of chemo.  I do bruise more easily these days but that could be from the low-dose aspirin I take daily.  And I am having a hard time losing weight. 

    I've managed to shed the weight I gained during chemo but have 15 lbs I would dearly love to lose but it's proving to be stubborn.  So I have a little tamoxi-belly and am thinking of putting a jewel in my navel and taking up belly dancing.  :-)

    The most annoying thing is the crepiness of my skin, I am starting to look older.  But I don't feel old...

    Gee, this sounds like a lot but none of these SE's interfere with my ability to live my life. 

    Hope the same is true for you - good luck!  {{hugs}}

  • ktym
    ktym Member Posts: 673
    edited June 2011
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    Cyborg, It made me sad to hear someone ask if anyone has ok or positive experiences on Tamoxifen.  I think these boards do a disservice to women when it comes to hormonal therapy and seeing your thread start really points it out.  A large number of women come here when they're diagnosed, post a lot during chemo, some during radiation, and those with trouble on hormonal therapy stay around, and a large number go on about their lives and do well on Tamoxifen or an AI and we never here from them again.  Or, they only pop in sometimes to say hi, and the issue of how they're doing on hormonal therapy never comes up.   The end result is the bad stories about hormonal therapy end up dominating the threads and it is a shame.  Yes, some people have SE's they can't get past and stop treatment.  Statistically over 70% never stop treatment--they usually don't post here. So, as you're reading through and getting scared (I know I was) please remember that.  Some of these threads scared me to death about starting Tamox.  I did have a rough time the first couple of months, got tolerable the next few months, easier the next 6 months, and by 14-18 months I was doing fine.  I have to take the pill bottle out and put it next to the coffee pot every morning, and I don't put it away until I take it or I'd forget I'm on it.  2.5 yrs into taking it and my only worry is remembering to take it.  (Except for the two times my Onc told me to stop it for surgery etc I can honestly say I have not missed a single day of taking it).  My unscientific observation is that going on and off and back on is hard and taking it every day is the best way to even out the side effects. I know it sounds daunting to hear of months of getting through the initial SE's, but, you know what I get in return?  YEARS of benefit. I feel lucky to have a drug that works so well for so many women that gives me peace of mind for 5 years of taking it.  Plus, studies show the benefit lasts for several years after I'm done with 5 years of taking it.  I'm young, I have a lot of years to worry about recurrence, progression, a new cancer, the ability to take a pill every morning that makes my chances better I'll take it.

    My hot flashes were really bad at first--gabapentin/neurontin helped. The mood swings I had to learn to recognize when they were coming on and try to stay away from people. The insomnia I broke down and got some meds to help with.  The weight gain was and is a struggle. That I'm ticked about.  I asked my Onc why I wasn't better prepared and the answer was they didn't want it to be a self fulfilling prophecy.  Screw that, I'd rather have been warned.   Don't let anyone quote you the original articles about how weight gain on Tamox wasn't higher than placebo.  Many articles since then have shown it to be a real problem, and a recent ASCO presentation showed that premenopausal women going on it gained the most weight--thank you very little!  So, that I'd warn you about.  No way around it, it makes you menopausal and for menopausal women carbs go right to the middle. My best advice for that is to be more prepared than I was and only eat controlled portions of carbs and make them all complex carbs.If you can afford it get a trainer and get some guidance.  BC treatment changes our bodies and I had to learn a whole new way of exercising for the new "older" me.  Vaginal dryness is another whole topic.

    So, yes, many many more than you'll hear from here do fine or even great on these meds, and they do work. Good luck.  Please reach out and get advice when you need it---but hopefully from someone who will encourage you to get past the first few months and stick with it

  • Cyborg
    Cyborg Member Posts: 192
    edited June 2011
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    Thank you everyone for the positive feedback. I am not eating meat, dairy and sugar . I don't know if tat will be very helpful with keeping my weight down.

  • slinky
    slinky Member Posts: 166
    edited June 2011
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    Cyborg, I have been on Tamox for almost 5 months. Initially some warm flashes, but nothing severe. Some joint pain that I treat with Aleve and some weight loss. I did change my diet a little and cut out salty foods, so maybe that explains the loss. All in all, no real problems to report on Tamox.

  • AnneWisc
    AnneWisc Member Posts: 338
    edited June 2011
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    The worry I had about tamoxifen is blood clots.  I am fairly inactive and sedentary due to being handicapped, and I would really worry about that one.  If you had a clot and then a stroke, you wouldn't likely be posting here, you'd be dead or in a nursing home!  To my mind that's more like a risk, than a side effect.  Yes, I'm worried that in my case the medicine could kill me.  So me and the medical oncologist decided to pass.

  • zoey1
    zoey1 Member Posts: 6
    edited June 2011
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    I was initially diagnosed at age 45 and refused Tamoxifen. I was diagnosed again last year and started Tamoxifen the day after my biopsy. Initially I was dizzy but that is long gone. I take it at night and have mild hot flashes. My period id fairly regular (I'm 50 now) but very light. I have put on 10 pounds. All in all, not a bad ride!

  • whatRstatsanyway
    whatRstatsanyway Member Posts: 7
    edited June 2011
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    I started tamoxifen in December of 2009. Initially, I experienced a few warm flashes, but that goes with menopause anyway. I didn't gain weight, it sorta settled in the "middle" - the comment about the "tami-belly" is pretty accurate - again is this why they refer to "middle age" as settling in the middle?

    All kidding aside, Tamoxifen has not been difficult at all. I will be starting on Arimidex when I am officially menopausal. I am really apprehensive about the change in meds as I need my hands to work- the possibility of carpal tunnel and arthritic pain doesn't sound too good but we'll give it a try. In my case, I was 100% ER,PR positive so the antihormonals, according to the onc, were as important, if not more so than chemotherapy.

  • SpunkyGirl
    SpunkyGirl Member Posts: 16
    edited June 2011
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    I've been on Tamoxifen since I finished rads in 2007, and I only had a few problems for the first couple of weeks I was on it.  I was short-tempered, and that wasn't me at all.  But it didn't last long, and I'm glad I stuck with it.  It's very easy to get scared about any drug, especially if all you hear about are the bad stories. 

    I personally think that exercise has helped me a LOT.  I exercised before cancer, and still do, and I think being active just helps.

  • ftblmom3
    ftblmom3 Member Posts: 7
    edited June 2011
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    I thank you also for posting this. I just asked my Onc this week if i could hold off taking Tamoxifen for a while after i finish rads. He asked why? i said the surgery and the rads were both harder than i had anticipated and now i am worried about the Tamoxifen after reading some of the things i have read here and other places. He also reminded me that Tamoxifen is proven to be wonderful in especially my kind of cancer and he will keep close eye on me if i had any problems.

    Though i am sure i will be looking on here when i start taking it and hope i don't have to add any SE's off it!!! Good luck taking it! I will be joining you in about 4 weeks!

  • christine47
    christine47 Member Posts: 846
    edited June 2011
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    I am excited to start my Tamoxifen (my onc was to call inlate last week), I checked with the pharmacy two times, I quess he forgot, I will call tomorrow and make sure he sends.  All I can read about this drug is remarkable for us stongly hormonal positive girls.  I will take side effects over cancer reoccurance any day. 

  • Cyborg
    Cyborg Member Posts: 192
    edited June 2011
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    I still have a couple of rounds of chemo to do. I am also doing rads and I don't know if I am to begin the Tamoxifen after the rads of before. I start the rads a few weeks after the last chemo infusion.

    thanks again for all of the feedback.

  • Resting
    Resting Member Posts: 117
    edited June 2011
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    Hey Cyborg -

        I've been on Tamoxifen for 8 months. Until recently I had no real side effects to speak of. The recent ones being some body aches, and tendinitis in my thumbs. Both are treatable.

      One thing I've learned about chemo and taking Tamoxifen is that you are generally thrown into menopause if you weren't in it or thru it already. So things like hot flashes and mood swings begin to be a problem. I take a small dose of Effexor for my hot flashes and it works well.They're more like warm flashes and I don't have that many. It helps with the moodiness too. So how do you know if it's the Tamoxifen or the chemo induced menopause that are to blame for your side effects/symptoms? I don't really know nor do the doctors. 

       The Tamoxifen is cutting out your estrogen everywhere it can find it and it's gradual. Thus you can develop symptoms later on - like 8 months later. As it's doing the job of getting rid of the estrogen you can have symptoms from menopause or side effects from Tamoxifen. These can arise at various times, they also can come and go. This is one reason why you find all kinds of experiences and frustration on the Tamox threads. And it can be discouraging. But don't let it spook you, you haven't even started yet. Go into it with a positive attitude and don't expect the worst. Then just take it one day at a time and always communicate with your physicians - part of their job it to help manage any problems that come from tx.

       Wishing you the best, Carolyn

  • awb
    awb Member Posts: 213
    edited June 2011
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    the only SE I can really remember having from tamoxifen initially was a bad yeast infection, but that was treated by diflucan and I never got another one in 5 years. I've had hot flashes, some mild insomnia and achiness, but I think those are more from my total hysterectomy than the tamox. It is a good idea to have a yearly transvaginal US while on tamox to monitor both the uterine lining and the ovaries. I agree with kmmd----I'll put up with the SEs to gain years of protection.  (my mom also took tamox for 5 years and tolerated it well--she's a survivor of over 24 years and still doing well)

    Anne

    Anne

  • bcincolorado
    bcincolorado Member Posts: 4,711
    edited June 2011
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    I can tell you my son-in-law's grandma has been on it for over 10 years and done fine.  She did not want to stop when doc told she could because she was too worried cancer would come back.  So far she is cancer-free......

    As far as I'm concerned, no matter how your body reacts to it, the main thing to keep in mind is keeping it from coming back! 

  • singlemom1
    singlemom1 Member Posts: 260
    edited June 2011
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    great post cyborg! I think it can get very scary to hear about the difficulties people have without hearing the positive. It is a good reminder to all of us to ask to hear from people who have not done bad with tx.I am very very grateful there is a drug to help with hornome pos patients! This is wonderful but the truth be told for me and I am sure other people the SE are difficult in many ways. I am in my young forties and have a young child. I am not Married and have always hoped to still meet that someone special. This is very hard to begin with when you are in your forties, have a young child ( with no help from a father or family) work full time and commute 2 hours round trip to work everyday. To add the physical difficulties and changes to my body that come with BC is going to be hard on my self-esteem and eventual hope to still meet a loving and strong man in my life that could also be a wonderful father for me. So the changes to my body are distressing though I am doing my best to try and positive, it helps to hear that some people do ok on various tx and have minimal SE. Thank you all!

  • singlemom1
    singlemom1 Member Posts: 260
    edited June 2011
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    ooppps - meant to state father for my daughter - Freudian slip???????? I

  • Abbey11
    Abbey11 Member Posts: 7
    edited June 2011
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    I have taken tamoxifen for 2 and 1/2 years.  I have almost no side effects.  I had some mild leg cramps at the beginning and still have very occasional hot flashes.  I've also had a little trouble with dryness - vaginal, skin, and (weirdly) eyes.  I use lots of lotion and eye drops.  That's it!  I think it's the easiest med I've ever taken.  As many others have said, we are likely to hear from women who are having problems.  Those of us who tolerate tamoxifen well don't often post to say that everything's going great.  Maybe we should!  I hope tamoxifen is very easy for you.  Good luck.

  • sgreenarch
    sgreenarch Member Posts: 253
    edited June 2011
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    Dear cybourg and others about to begin tamoxifen:

    Just dont worry and dont think too much. For the vast majority of us the SEs are manageable. We come on these fora to commiserate and to try to help each with solutions, but for essentially relatively minor problems. I could see how you could read these threads that go on for hundreds of pages, and freak out, but understand that bottom line, most of the issues discussed are more annoying than life threatening. Tami is a proven good drug for preventing (thoigh not always) recurrences. That simple fact outweighs the SEs. Come here for suggestions on how to cope/deal with SEs, which you may not even have, but put your mind at ease. We are lucky to have good anti cancer meds at our disposal which lets you see this in a positive light.

  • BeckySharp
    BeckySharp Member Posts: 465
    edited June 2011
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    I started tamox in March and no SEs.  I am sleeping better and have lost weight.

  • pj12
    pj12 Member Posts: 18,108
    edited June 2011
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    I was first put on anastrozole (Arimidex) and took it for 15 months. Lots of aches and pains,  hot flashes, leg and hand cramps, but worst of all, terrible weakness. I finally told my onc that I had to quit it and would be willing to try Tamoxifen.  I have gotten along great. Hot flashes are just about the only side effect. My hair is thickening back up too. I have been on it for almost one year. No weight gain, plenty of energy. So grateful to have Tamoxifen as an option!

    Good luck :) 

  • DebInTN
    DebInTN Member Posts: 9
    edited June 2011
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    My experience has been that, compared to Arimidex and Femara, Tamoxifen has been a BREEZE!  The main SEs I have had  on T have been hot flashes, some aches and pains (but nothing like while on A & F), and some fatigue.  I began taking Peridin-C today and am hopeful that I can get some relief from the hot flashes.  I have more energy now. My hair and eyelashes have stopped falling out.  Weight gain has stopped, but sadly I'm not losing any - BOO!  

  • ktym
    ktym Member Posts: 673
    edited June 2011
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    Cyborg, so happy you started this thread.  All these responses were so needed!  Anyone know someone who went from Tamox to an AI instead of in the other direction, curious as to whether that made a difference in the tolerability

  • raili
    raili Member Posts: 96
    edited June 2011
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    I've been on Tamoxifen for a year, with almost no side effects at all.  Occasionally I have a mild "warm flash."  Pretty much the only way I even know the Tamoxifen is having an effect on my body at all is that my period is 2-3 days shorter each month than it used to be.  (I'm 32, and still menstruating monthly, even on Tamoxifen). 

    I was SO SCARED of Tamoxifen when my onc. prescribed it for me last year that I cried through the entire visit then wouldn't even bring the bottle out of the car and into my house for several days, nevermind contemplate opening the bottle and swallowing one of those scary white pills.  But once I started taking it, I was relieved and happy to discover that it really wasn't bad.  I don't have weird aches and pains, no mood problems, no awful hot flashes, no sexual or vaginal problems, and no weight gain.

    I get 8 hours of sleep most nights, exercise regularly, eat very little sugar and mostly veggies, take lots of anti-cancer vitamins/supplements/herbs, never drink or smoke, etc., and I wonder if being in great health overall/working hard at staying healthy and well helps prevent or alleviate the Tamoxifen side effects.

  • Cyborg
    Cyborg Member Posts: 192
    edited June 2011
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    Hi, Raili!

    I am so happy to here u are doing well on Tomaxifen. I think the chemo will be taking me into menopause. You are young so I can see why you would still be having your periods even while taking tomaxifen. My friend is taking it and she said that she just feels a little tired. I don't drink alcohol or smoke either. Thank you for responding.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2011
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    Thankfully, I haven't had any side effects, whatsoever...and I'm also doing Lupron shots as well.  Life is good.Kiss
  • Cyborg
    Cyborg Member Posts: 192
    edited June 2011
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    Thanks, voraciousreader!!!

  • vmudrow
    vmudrow Member Posts: 415
    edited June 2011
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    My mom has been on Tamoxifen for 21 years!!  It has worked so well for her the doctor wants her to keep taking it - even though all the studies say to take for 5 years.  She doesn't seem to have any side effects and can't remember if she had any when she first started taking it.