Tamoxifen side effects?

Hi Louise,

I have been on Tamoxifen for nearly 2 years and have not had any major side affects, just small anoying ones like - headaches, dizziness and nausea. It's not constant but its noticable and I have noticed that my finger tips go numb every now and then but not sure if thats a Tamoxifen thing or not. I hope this bit of info helps.

So you start chemo next month? I wish you all the best and hope it goes as smoothly as chemo can.

Tasha xx

Hi Louise,

I have been on it for a few months now. The best thing I can recommend is to start slowly - 5mg then 10mg then 15 then 20 (assuming you are on the 20mg tablet) this REALLY helps with that full on effect you feel at the start. I went up another increment after each week. My mother in law is a pharmacist and said this was a good idea. I figure that if I am on it for 5 years then working myself up to the full dose isn't going to do much harm. I am really glad I did because I started getting huge night sweats on 5mg then my body slowly got used to it.

Everyone is different but my side effects are as follows:

Night sweats (sometimes)

A general 'foggy' feeling. I am not as mentally alert - I liken it to the pregnant memory loss that I experienced.

Headaches, pins and needles in hands and feet.

Moodiness.

I am coping. Some days better than others, I guess. I know someone who had no side effects at all so don't take my words as meaning that you will suffer the same. 

You should ask your oncologist what drugs and herbs interact with Tamoxifen so that you know what you can take with it. I have just asked my mother in law to get me a print out of interactive drugs etc with Tamoxifen so if you have any questions, feel free to contact me.

Good luck with everything.

x Sara

I went on Tamoxifen for 4 months and I was in the group of women it doesn't work for...I am kind of glad I did';t stay on it though...these are the side effects I had

Headaches

anxiety (also possibly related to procesing cancer stuff post treatment)

depression (as above)

Achy legs (especially on the side with varicose veins)

Fuzzy head

I am now on Zoladex injections and the only real thing I have noticed apart from the long list of menopause symptoms is that i have gained a little weight but that can be from the menopause it self! I am soooo over all the drugs I am going for the surgery to have my ovaries out and there is a possible alternative to Tamoxifen called DIM or Indolplex...although no studies have shown it to be effective at all but in theory it MAY be effective I wasn't willing to stake my life on it personally and lets face it, that's what we're doing...What I found helpful was getting them to caluclate the differences in treatment options, ie with and without hormone therapy to see what kind of difference it will make...for me no hormone therapy at all meant a 30% reductionin my survival rate so I wasn't willing to try a herb that wasn't proven to work...there is just too much at stake...There is also another herb that they say may work but again I wasn't willing to chance it...I am all for herbal and alternative medicines but I also have 3 kids and don't want to play with my life like that either...Once I get my ovaries out I think I will be taking indolplex instead of aromatase inhibitors though, as once your ovaries are out I figure that's getting the estrogen pretty darn low anyways..... Hope that's helpful :O) 

Hi Louise

My name is Julie and I am 47 years old and I too have begun taking Tamoxifen....I started mid November and so far so good....I'm not experiencing any side effects from the tablets

I make sure that I eat well and exercise! I think this is the key to keep fit and positive mind!

I feel everyone is an individual. It's good reading information but like I said, we are all different and everyone's bodies reacts different to drugs.

I hope you do well with treatment and keep us posted on how you are going

Good Luck

Julie

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

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 ive been on tamoxifen for 9 mtns now it have taken a bit to get use to my side afects are weight gane 6kg size 12 but i was an 8 so im feeling it . ( new wardore would be nice) hot flushes are still bad but have gotten a bit better my husbane got me a cool mat and pillow from caption snozze it the best thing it realy helps with the flushes at night so you can get a bit of sleep there dear around 200 for the mat and 80 for the pillow but worth it .i taket remmyfem tables they help with the moods brain still gets a bit fuzzy i put the milk the washing machine and i put the cheese in my sons cubbord the other day   im in full menpause  skin is realy dry all the time no matter what i put on. no sex drive at all. depreson that can be hard some days are good others are better but im here i love my life to much so will keep taking tamoxfin for my 5 years  and get some new clothes xxxxxxxx love angela  when doing cemo i had baths with epson salts 1cup bi card soda1cup 3 lemons cut upin hot water then add to bath this really helped with the pains drawing out the cemo cemicals xxx

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

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

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.

Hi Gay,

You're right, my oncologist had never heard of I3C. He put me onto Arimidex which only took 5 days and I had insomnia, tight neck which gave me headaches and itchy eyes. I will go back and see him but I don't know that there are any other options. Maybe a hysterectomy?

Here's some information on I3C. Maybe it's something we can ask NBCF to do some research on. 

 http://www.greendispensary.com/3compounding/6-jI3C.html

I haven't tried buying it here but assume it's available. It's very hard making decisions based on statistics as we are all different and I agree that at the moment the cure is worse, insomnia is just awful as I'm just too tired to do anything. 

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

Ive 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?

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

Hi Ladies,

I've made the decision of stopping taking tamoxifen. The side effects are really killing my life. I've stopped on Christmas day and I feel so much better now. My ankles were very swollen and I felt like I was loosing my mind. I've been reading hips of books and heard that natural progesterone cream can help with the side effects of menopause. I've ordered the cream through this webside www.wellsprings-health.com 

I can't wait to try it on. I'll keep you posted. I will see my oncologist on 19/1 and I'm not looking forward to our discusion knowing how some doctors feel about natural alternatives to tamoxifen.

 Good luck to all of you.

Kind regards 

Im close to stopping it too. Be careful, though Linda. If your cancer was Progesterone receptive taking a natural alternative may be a bad idea.

Jan-I'm not sure what l3C is?

Angela- my heels are killing me too. I'm going to ask my Oncologist about it as I'm worried about any bone pain. Don't want to become a hypochondriac though.

Can I blame Tamoxifen for weight gain? I'm going to the gym and eating well but the kgs are going on!

When is enough enough?
Diane

yes i think we  can blame the tamoxifen i neverhad weight probos before takeing it.  i walk heaps and eat realy welland would love to stop but my cancers are hormone based so not a good idea 4 years to go unless the change i.t im going to try so mag powded nexted weeks see if that helps with the pains bone heels and so tried some days im thats is it im off this crap them i look at my son and husband and i just keep on keepen on love angexxx

Hi Diane,

It's not an easy task to stop a med that is supposed to save my life but I can't go on with the med. I'm oestrogen receptive but progesteron negative. I've bought a book by Doctor John R Lee: "What Your Doctor May Not Tell You about Breast Cancer" , I've not received the book yet but I can't wait to read it. I have not started on my progesteron cream yet, then again can't wait to start. Talking about weight gain on tamoxifen, I've put on more than 10kg over 2 years on it.

I'll keep you all posted about my condition after tamoxifen

PS: 2 weeks without tamoxifen and I feel much better, no more swollen ankles, less wood swings. I still suffer from night sweats and hot flushes.

As females, oestrogen are the essence of who we are and trying to remove it competely from our bobies is creating other problems. We need these hormones in our bodies in order to live quality of life. Our doctors only see the disease, they don't have a holistic approach to the disease, they often compromise our quality of life and create a fear approach, what if the cancer comes back....

As cancer patients, we have to keep ourselves informed ot what else there is out there so we can make informed decisions when it comes to our health and wellbeing.

Kind regards.  

Hi All

I have found more information about I-3-C (Indole-3-Carbinol) on GoogleScholar but it is technical / medical research so pretty hard to understand for the lay person. It is supposed to assist the body to process & eliminate oestrogen more effectively.

Its hard work isn't it? Trying to eat well, exercise well, recover well & to keep trying to understand how you want to deal with treatment and all the options.

Regards to all

Jan

I've been trying to work out if it's tamoxifen causing the side effects. Haven't been on it since October and still have the same symptoms as when I was taking it. So, can it be menopausal given that chemo pushed me into it? Symptoms could be related to menopause. Also symptoms also similar to thyroid dysfunction. Spoke to my herbalist who did thermal imaging, thyroid was very red, an indication all might not be functioning as it should. So am now undergoing other tests for thyroid. Herbalist mentioned that if cortisole levels are out of whack (and after all we've been through that's more than likely!) it can cause all sorts of problems.She's also checking all my hormone levels through a saliva test and that'll give a bigger picture. As she says I'm sound structurally we need to work on the internal workings. I'm on minerals with magnesium and also liver detox and do feel better. I agree it's hard work looking at options but feel I'm getting somewhere which really helps pyschologically not to mention emotionally.

I did a liver detox after chemo & it was great! Herbalist recommends every few months or so.
From reading this blog it seems that weight gain on Tamoxifen could be related to our bodies trying to store oestrogen ie. in body fat! Sounds logical.
I've recently discovered kale & all it's health benefits. If it can process oestrogen, even better! Rather not take any more drugs but I'll look at the web sites mentioned here.
Elisa-I'm wondering why you can't have reconstruction? Did the hysterectomy scar prevent you having a DIEP or Tram flap done?
Keep on sweating it out girls! :)

As my very supportive GP says: our bodies do not produce oestrogen to give us breast cancer! We need oestrogen to function fully at many levels, including cardiovascular health, brain function, etc  

After surgery for breast cancer 19 months ago, I have (with guidance of my GP) the following regime: I do a hormone saliva test every 6 months, which provides us with an exact "picture" of my oestrogen levels and whether my liver is in fact metabolising the oestrogen to be effectively utilised in my body. The day an oncologist offers to actually monitor my oestrogen levels and recognises the role of the liver in oestrogen metabolism, is when I will give any attention to aromatase inhibitors. I ensure that my liver is functioning well and to that effect do a regular liver detox.

Further I take I-3-C, Resveratol, Coenzyme Q 10, Quercetin, Vit C, Vit D, Vit B and some mineral supplements (monitored by hair mineral analysis). I also take calcium as I have eliminated cow's dairy from my diet (due to hormones in it) except for some occasional organic dairy treats. Also only meat which is organic and free range and which I know where it comes from. I have also greatly reduced my sugar and alcohol intake, with only occasional treats and try to generally follow an alkaline diet. Nothing extreme, just a healthy balanced approach.

Furthermore, I have completely eliminated any cosmetic and other products containing parabens and a number of other petrochemicals (e.g. in sorbalene) and harmful ingredients. I also do not drink water from clear commercial plastic bottles (only BPA free plastic) even the pink Mnt Franklin ones "supporting" breast cancer. I am taking the precautionary principle on this and accept the growing evidence that many plastic materials contain xenoestrogens which introduces foreign mimicking oestrogens into our bodies. Why take an aromatase inhibitor, when you are not eliminating other bad oestrogens from your environment and body?

I am feeling better than ever before and although nothing can remove the fear of metastasis from my life, I at least feel I am giving it my best shot with my own efforts.

Christine, many thanks for your informative & comprehensive reply. I'm inspired. I'm working my way through "What Your Doctor May Not Tell You About Breast Cancer" so I'm coming to grips with why the hormone saliva testing is a good idea. I'm also taking Coenzyme Q 10 as recommended by the naturopath to provide heart protection from Herceptin. A lot of the naturopathic help I have received has been around supporting the liver which I really needed after chemo and want to continue with for oestrogen processing.

We were in the process of changing diets anyway as my husband has recently recognised his gluten intolerance so I'm doing a lot of reading, researching, thinking & working out how to incorporate all these changes.

I'm feeling fairly positive about changing the way we live. They are not radical changes for us but even small changes take an effort. However we have the best possible reason for wanting to change.

Best wishes.

Some great suggestions here thanks ladies, to improve our health and survival!

I've switched to buying organic fruit and vegetables. I get a fortnightly delivery which is lovely and fresh, and lasts well. It is dearer though. Woolworths also has a nice range of organic produce, grocery lines and meat. I found its made a difference to how I feel - really healthy inside! My daughter's skin has cleared and we all have more energy. It's worth the $s.

All the best to us in good health! <3

Thanks Christine for confirming what my naturopath has suggested I do. I am also doing the hormone saliva test which gives the best picture regarding oestrogen levels. Liver detox to help the liver metabolise, vit B, minerals, folic acid, estrofactors to support oestrogen metabolism. I'm also taken a herbal mixture to support adrenal function as I am carrying lots of tension in my body due to my anxiety. I'll do another saliva test in 3 months as I've started taking arimidex again to see how I go although I think that the I 3 C and the regular hormone check might be the way to go. I am feeling very well, energy level is increasing, sleeping much better. I am currently not eating meat,  I think organic is the way to go and have cut down dairy intake as I had read a very convincing argument on the effect of cow's milk. It's great that you have a very supportive GP and I agree about the oncologists,when I mentioned to mine I had seen the naturopath, I got a glazed expression. Thermal imaging has also given me peace of mind and I'm happy with where I am at right now. Working full time and enjoying it, going to the gym, improving my French and being there for my three adolescents is keeping me busy and it's great to have the energy to do it all!