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 :)

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

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 Belinda, When you say you were 'in the group of women it doesn't work for', what do you mean, exactly? Are you talking about the side effects? Or did you get that CYP2D6 genetic test done? I would love to know more. Thanks, Sara

Tamoxifen side effects? | BCNA Online Network

109 Replies

Deeay
Member
11 years ago
Hi Annie,

I had this too! Its gone now but drove me crazy. My Doctor couldn't work it out and Oncologist said probably caused by chemo. I even went to the Dentist and had all my silver fillings replaced with tooth coloured amalgam ones. I finally just forgot about it and accepted it. Mine was more in the saliva or back of my throat. Its gone now anyway and I'm 3.5 yrs post Chemo. Probably went last year. Can't remember. So hang in there!!

Just an aside - can you change Tamoxifen brands? I've tried a few generic ones over the years and some seem less offensive. Maybe that would help?

Also have you had a good check to see that you are still cancer free? Just a thought.....

All the best, Diane
Annieh
Member
11 years ago
Hi,

Well have posted before re: my story but now need to see if anyone out there has similar problem. Diagnosed back in July '13 (had Chemo & Radiation Therapy). Completed treatment Dec '13. I also had that shitty bloody metallic taste during the Chemo but thought it had gone by Jan 14.   I had Pancreatitis in January also and then finally had Gall Bladder out in April (they are still not sure of cause).

I then started Tamoxifen in July. But have noticed that my taste (and specifically TEETH) are not right. I have a metallic taste everytime I eat or drink and now look for food to get taste (like crisps/chips for salt). Really getting to me as been going on for about 6 months. Called Oncologist and said go off Tamoxifen (1 month) and then see him. Appt. this week but not sure what he will do for me.

Not sure if it is a cause from Chemo or some other medications but I need to sort it out.   Have a name I think it is called (Dyguesia). Got this off my Skin Specialist, even though I had mentioned to my GP and Oncologist a few times before they must think it is just in my head. Seriously, it is like putting aluminium foil on your teeth and then try to eat and drink.

Denist said teeth are ok.

Does anyone else have this problem?

(probably from the Chemo) who knows.

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Tamoxifen side effects?

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