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
- 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
- LelMember
Hi Lovely Ladies,
I have been taking Tamoxifen for about a month now and find the moods swings the worse. The last couple of days I have had pelvic pain and into one of my ovaries. I will check in with the medical oncologist with my next visit in a week or so. No real hot flushes or major night sweats. I know someone earlier mentioned Indoplex. I am taking that as well as Tamoxifen. I have been seeing a Nautropath and she believes that they can be taken together. She has read a paper on it and as I understand the Tamoxifen blocks the estrogen receptors and the Indoplex helps metabolise and eliminate the estrogen. I am considering the CYP2D6 gene test to see if I metabolise Tamoxifen. I don't see the point of taking chemicals if they are not working.
It's such a journey and I guess at the end of the day, I have to find peace with what knowledge I can find. Thank you all so much for your information. It is so nice not feel so alone. Blessings.
Lel
- LelMember
Hi Lovely Ladies,
I have been taking Tamoxifen for about a month now and find the moods swings the worse. The last couple of days I have had pelvic pain and into one of my ovaries. I will check in with the medical oncologist with my next visit in a week or so. No real hot flushes or major night sweats. I know someone earlier mentioned Indoplex. I am taking that as well as Tamoxifen. I have been seeing a Nautropath and she believes that they can be taken together. She has read a paper on it and as I understand the Tamoxifen blocks the estrogen receptors and the Indoplex helps metabolise and eliminate the estrogen. I am considering the CYP2D6 gene test to see if I metabolise Tamoxifen. I don't see the point of taking chemicals if they are not working.
It's such a journey and I guess at the end of the day, I have to find peace with what knowledge I can find. Thank you all so much for your information. It is so nice not feel so alone. Blessings.
Lel
- louisegMember
Thanks Linda. I started on Tamoxifen about a week ago and so far so good! I was getting hot flushes at the end of chemo but they seem to have stopped at the moment....and I haven't really noticed any other symptoms (maybe a bit moody but I'm tired at the moment so it could be that!).
I don't know if the side affects are cummulative or if I would have already felt them, if I was going to get any, by now.
Anyway, I'll keep everyone posted :)
- Linda_TontaMember
Hi Louise,
I've been on tamoxifen for 18 months after undergoing a mastectomy.
I must say that some days, I feel like I'm in someone else's skin. I have a lot of night sweats that keep me awake and feel very tired during the day. I feel pain in my legs mostly the right one and I am very moody which is not like me at all. Some days i feel very low and that's when I think about stopping the treatment and then I think about my 2 girls. I don't know what to do, my oncologist is telling me that the good of this treament outweigh the sides effects but i don't know.
There is a webside you could check for more info about Tamoxifen here is the address:
http://www.all-natural.com/tamox.html
I wish you and all the ladies all the best with the treatment.
Linda