Forum Discussion
Kez_Za
12 years agoMember
tamoxifen side effects
I wouldn't mind some advice/support/hints on experiences and how you have dealt with tamoxifen side effects. I have been on it now for two months and am having headaches, nausea, very tired no matter how much sleep I get at night, some cramping around the ovaries and period pain like cramps... sounds like fun!
For 5 years!? how will I do it?
29 Replies
- JenjoyMemberHi ladies, just a note re Tamoxifen. I had so many issues taking this drug such as nausea that progressed into vomiting at night and depression that left me in crying all day in bed, that I ended up in tears at my oncologist's office twice. Eventually, he took me off it and sent me for some tests. Within 7 months of taking it, my liver was showing disease where before it was perfectly normal! If you are feeling low or have recurring vomiting issues, please talk to your Dr about it as soon as possible. Not all the possible side effects diminish in time, sometimes they are a warning of deeper issues with the drug. There are a few different alternatives out there that may be more suited to you, don't be afraid to try them.
- InkPetalMember18 months of being this cranky!? NO idea how the people around me are going to cope. :lol:
- socodaMemberI have been told by my oncologist that normally by 18 months the major side effects settle down. (Seems like a long time but reckon I can do that ;)).
- pjn58MemberI started on Arimidex, after 2 months the joint pain along with many more symptoms was just too much to handle. My surgeon advised me that no medication would not be advisable, so I have now been on Tamoxifen for 4 months, I struggle with fatigue, hot flushes, cramping, headaches, nauseous & fluid retention. It was comforting reading your posts & to know that others are feeling the same. 5 years is a long time & honestly no I prefer not to take it!
I am hoping that the longer I take it my body will accept it & the symptoms subside. - melclarityMemberIm with Janet, I honestly feel its not so much the medication but menopause. I didnt have any problems on Tamoxifen 4yrs pre menopause. Chemo threw me into menopause and now on Arimidex. I think Menopause has a massive affect coupled with the meds maybe.
- RNSWMemberHi
I have been on it for 8 months and unfortunately I had the dizziness to but that did settle my biggest issue is the joint pain which has gotten better with tumeric tabs. I also find laying down for an hour during the day helpful. All the best xo - Janet_PlummerMemberI have been on tamoxifen for four years, just starting my fifth and hopefully final year. I had slight nausea and dizziness in the first few weeks but that passed quickly. I had mild hot flushes which continued for a couple of years. But maybe I would have had them anyway as chemo put me into menopause. Still get the occasional one actually. Otherwise no real symptoms that I can definitely attribute to tamoxifen. Managed to avoid gaining any weight which was a big fear for me but I have to be vigilant with that and exercise regularly/watch my diet.
I do struggle to get a good night's sleep at times but then that's always been a bit of a problem for me so not sure if tamoxifen has made it worse. Will be interesting to see when I go off it next year. Incidentally I always take mine in the morning. Thought it would be less likely to interfere with my sleep but who knows really. I would suggest you hang in there with it. Hopefully the side effects will ease. I think all the usual healthy lifestyle tips help ie regular exercise, healthy diet, minimal alcohol and caffeine. Good luck. I hope you feel better soon. - melclarityMemberI have to agree with Jane! I spent 4yrs on Tamoxifen premenopause and I honestly didnt notice anything at all. After my recurrence in 2015, and Chemo I was put on Arimidex as it threw me into menopause as well. I do have side effects on Arimidex mainly joint stiffness the main one which my Oncologist warned me about and yes somedays its debilitating. Honestly having been through this twice now, I havent found a reason to stop taking it. My Oncologist likened these medications to putting a bolt on the door. I dont like the idea of being on this for 5 or 10 years...but I can honestly say, Im finding ways to manage it all because I dont like the alternative. It is absolutely personal, do what is right for you. I found treatment personally to be far more worrisome than these medications. Hugs Melinda xo
- Hi Pattie, I completely understand your anxiety. I am taking Arimidex, not Tamoxifen, and I had the prescription filled and sitting on my bench for 2 weeks. I was so afraid to start. Looking back I think I spent too much time researching all the side effects and OMG what a horrifying list I found! I went to see my GP whose wife also had breast cancer. He looked up some clinical sites which showed the initial test cases on both Arimidex and Tamoxifen - the percentages of getting the worst of the symptoms were low and many ease over time. 4 months on just a little stiffness in my joints which I can walk off. I know it's not fair that a drug which will keep us healthy should have all these side effects, but it will help keep us cancer free.
We can do this - you can do it Pattie. Jane xx - iserbrownMemberI settled into taking Tamoxifen late afternoon as that seems to suit me best. I have side effects but I think my other medications are the main culprits.
It's also about acceptance of where we are with treatment and taking every opportunity to rid BC from our bodies.
Hopefully in your discussion you'll find the positives outweigh the negatives. Knowledge and understanding is key.
Take care