Forum Discussion
louiseg
16 years agoMember
Tamoxifen side effects?
Hi Everyone
I have read in a few people' s posts that they suffer from some side effects from taking Tamoxifen. I am 42 years old and after I have my chemo I will be put onto Tamoxifen for 5 years. What sort of problems do you have and what have you done to ease these problems?
I don't know much about cancer treatment so I am unsure whether there are alternatives or what sort of questions I should be asking my oncologist....I see her again on 27th October when I start Chemo.
Any info would be appreciated!
Thanks,
Louise
ps I have read the info in the My Journey Kit but it is very general and if possible I would love to hear some personal experiences if you are willing to share :)
109 Replies
- angela38Member
hi deeay ive been on tamoxifen 12mtns now and it only just getting used to it im 40 in march and ive just got 1 period last mtn dr going to see if i get 2 more will have to change pill as i should not be haveing them i still get stiff achy legs and feet are also sore on the heals get realy tried ALL THE TIME ive been keeping the weight off thats hard . hot flushes are still yucking 10 a day but thats better than 30 i was haveing but all in all im heaps better day by day love angex
- JanMacMember
Hi Pink Gilly & GayB
I am also thinking about taking I3C instead of Tamoxifen. Haven't discussed with oncologist yet & not looking forward to the discussion. I see a naturopath regularly & she helped me cope with chemo side effects very effectively. She suggested the I3C. I'm not keen on the hormonal therapies as I seem to be very sensitive to any drugs & experience side effects from any medication.
I haven't really decided what to do yet but thinking a lot. I will look up the websites you have mentioned. Its hard to find much about 13C.
Happy New Year & Good Health to all.
Jan
- DeeayMemberIve only been on it 6 weeks or so. No hot flushes but really stiff achy legs, especially after sitting or lying down. The soles of my feet are really stiff and painful too. I'm 53. Anyone else got these side effects?
- ElisaMember
Gay
I can say that worse don't happen at sea, I am ex Navy. The land is were trouble begins and ends. My mother like you had a hysterectomy when she was 26 so thats around 35 years ago. She decided on not taking anything. She did the Radiation, did not have any lymph nodes affected so was very lucky. But as she watched and I mean watched (NOT HELPED) me cope with my illness I turned the tables and armed her with everything she needed so that her decision was hers and not one that is forced by some oncologist to if given time to think (which they do not give you) would do. Empower yourself. No matter what your going to have misgivings on what you decide. I feel guilty now not finishing Chemo, but then I think to myself SO WHAT, i already had a 80% chance of it never recurring the chemo only gave me an extra 10% because you always have a 10% chance no matter what of it coming back so you have a 1 in10 chance of it recurring at some stage anytime any year no matter what you do. Don't be hard on yourself, your body as already done that for you, be easy on yourself and just make a choice. No matter what you do it will the right choice regardless of what will happen because it was your choice.
I travel because I love the world, cannot see the world in a coffin, cannot imagine being in a coffin would be bored stupid dead or not. Cancer makes our life stand still, I feel so boxed in at home, when I work, when i get home, its like i have to be moving or talking. I hate sleeping because it eats into my fun time. Its like have PTDS you literally are distressed about what just happened and realise that you nearly lost the one thing that you get one go at, unless your a buddist in which case you could come back as a gnat and they have like a life cycle of a day or something so who wants to be a buddist if that is the case, so i am on the move. I have no time for stupidity, cranky doctors and people who do not respect my choices in treatments.
Gay be who you want to be, educate yourself make a choice and stand by it. Your already through the hard bit!
- GayBMember
Hi Elisa - wow! that's tellin' 'em !! I had a hysterectomy about 35 years ago, still went through the most vile menopause which is why I'm so afraid of taking something that's going to give me hot flushes etc. again, but no guarantees of it working. It seems everything I google has the same [to varying degrees] symptoms. I just don't know what to do. Hellllllp...!!! Good on you for going travelling. Wish I could. I've had a very adventurous life which is probably why this 'sitting and waiting' is so much harder. Oh well..... worse things happen at sea as my dear old Ma used to say! Good luck, Gay
- ElisaMember
Ladies,
I am 42 on January 29 I was diagnosed on 17th October 2008, curative surgery on 22 November 2008 3 rounds of chemo last one news years 2008 Fiished 38 rounds of radiation on 17th April 2009.
Its been nearly 2 years since i had a full hysterectomy and have been on Tamoxifin for 3 years. I am about to go and have a blood test to make sure that I am in full menopause and they will probably change what I am on. The thing that I think everyone is missing is that you are stil producing hormones that effect (estrogen) no matter what and products like Tamoxifin are only blockers for those hormones. Having a hysterectomy was the best thing I ever did. My mood swings are the worst thing that I suffer no matter what, I hate them, they make me hate me but if you go into something fully armed with the knowledge that your going to suffer from this, as I did I forwarned my kids that I am going to yell and go off the handle at a towel being on the floor because like it or not thats what my life is until I finish with the tablets and menopause. I will continue to say to you all YOUR DRIVING, its your health you need to find and read up on all the types of treatments and decide for yourself what is best. Doctors are useful creatures and are highly educated animals but they are not the be all and end all of YOUR life. YOU are. I got educated, I educated my mother, the literature they give you is so monoslavic its almost ignorant of what you are going to go through. I urge you all once you have been diagnosed educate yourself educate educate. Once chemo and radiation is over you need to totally live your life as normal as possible and not live life as a victim, your not, you are an empowered women who is in control of herself and her surroundings you will spend so much time at hospital in the initial few months of the diagnosis that you will be pissed off angry and want to take out everything on the person closest to you. I had no one. I am alone and have been most of my life. They say see counsellors do it if you need to, but the whole sympathy you poor thing look pissed me off more. I went on living as if I had a doctors appointment every 3 weeks and was throwing up because i ate crap food. its how i got through. All i want to say is educate yourself. Find a hobby do a jigsaw knit i don't know something its cancer you 33 to 1 chance your the survivor buck up cheer up and live up. I work when needed and travel the rest. I love Australia but there is an entire world out there that I have to explore. Its got my name stamped all over it. so if you see me with a pink shirt with a big pink ribbon in your country stop me say hello and you never know we may just be become friends!!! BLESS YOU ALL LOVE YOU ALL GIVE YOURSELVES A BREAK. your gonna need it
- GayBMember
Hi PinkGilly, I'm wondering if you'd be able to tell me how you are going with your oncologist and his opinion on the I3C. My bet is that he'd say 'no', unless he's very progressive! Today I finished my 30 treatment radiation course and am supposed to start on Femara in 2 weeks. I'm 66 and way past menopause, but looking at the side effects of Femara, and Arimidex, I think the cure might be worse than the disease. I've been looking into Tamoxifen but that seems to be almost as bad although it's been around for much longer and therefore obviously it's more proven than the other two which are relatively new. I would much rather try an 'alternative' treatment like the one you mentioned, but, again, am nervous! What a coward I am. Has anyone any ideas?? Has anyone any information on the effectiveness of Tamoxifen? Thank you, GayB
- LelMember
Hi PinkGilly,
The product I am taking is Indolplex. I buy it from the Health Food Store. My Naturopth put me on it. It contains Diindolylmethane. From what I understand t comes from the same source - cruciferous vegetables. It may be a different product to 3 Carbinol. I have been taking it with Tamoxifen, although I soon will be going off that as I am having a complete hysterecomy and apparently the medication will change. I am considering not taking anything other that Indolplex. My understanding is that Indolplex assists in healthy metabolism of estrogen. Sorry I cannot help you anymore. My oncologist wasn't interested in learning more about Indolplex, even though I had some research papers supporting it. Good luck with your research and have a beautiful day!
- PinkGillyMember
Has anyone heard of Indole 3 Carbinol as an alternative to tamoxifen? It's a naturally occurring phytochemical found in cruciferous vegetables such as cabbage, broccoli, and kale. It acts the same way as tamoxifen. I met a woman in France who takes it and she has reached the 10 year mark. I have been taking tamoxifen for 3 years but have side effects such as anxiety, insomnia, low libido. I haven't been taking it for over a month as I was flying home from Europe and realised that my anxiety has all but disappeared and I'm sleeping. Have looked online and found lots of good reasons to take I3C and no known side effects. Am seeing my oncologist this week and will discuss it with him but any comments appreciated.
- ElisaMemberHello Ladies. I am now 42 very close to 43 and was diagnosed at 39. I did not do my full 6 rounds if chemo but did do 8 weeks of radiation and have been on tamoxifen for nearly 3 years. I have also at my own request had a full hysterectomy as I decided that it was the best couse of action for myself. I have never felt better. The only thing i dislike is not being able to have my breast reconstructed. I have not had any long term side effects other than going through menopause. But I chose that with the full knowledge I could not take hormone replacements. Everyone is different my children are in there 20's so I had better choices be able to make than most. I also did not tell anyone. I had a wig made (extremely) expensive but very few people know what I was going through. I love support and give everything to support woman going through this because it's a lonely journey even with the greatest friends. With tamoxife weigh up your options. My mother refused to take it. She got cancer a year after me and she us doing okay. I love my life but am feet scared to tell anyone especially prospective employers. Do what you think us right once you decide on a health plan you cannot have regrets it's to late to change. Get all the information research and DO NOT get pushed into anything by oncologists yes they are the doctors but it's your life. Do what us best for your wellbeing. You are the one going through this. Do not let others make it about them. They live cherish and honor you but YOUR DRIVING