Forum Discussion
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
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
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!
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.
- Hello 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
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
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
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 :)
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
Hi Louise
Thanks for replying.
I too have hot flashes. It began if I recall after I finished my chemo end of August but they are getting better.
Would love to hear about how you are getting along with the Tamoxifen. I wish you all the best and remember keep positive!
All the best Louise and if you need to ask anything, Im here.
Best regards
Julie
Thanks for the reply Julie (and others !)
I am going to see my oncologist tomorrow afternoon so will be sure to ask some questions and get as much info as I can. I have been getting hot flushes already (I assume from the chemo) so I know what they are like - although for the last week they seem to have subsided again!!
I know that everyone is different and my experience with Tamoxifen may not be the same as anyone elses but I will try to put my experiences up here in a few months so that others can read how it has affected me too :)
Louise
