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.
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.
Debbiana
Member
11 years ago
Hi Joy, I have been taking Tamoxifen for the last 10 months. I haven't noticed any headaches (nothing out of the ordinary) but I have had swollen ankles which is something I never experienced before. I feel like I have generally gained a bit of weight, especially around my waist and I am getting plenty of hot flushes. Otherwise, no other side effects so far.
Joyfull1
Member
11 years ago
it has been really interesting about the variety of other people's experience, and our interpretations. I am into my 6th year of using tamoxifen. In the last several years I sometimes get headaches - I have one now, which is I am checking the site - which last even two or three days. I always considered myself a person who didn't really get headaches, never took Panafon, never needed to. But I am prone to a sinus type headache now and have no idea if it may be related to my treatment, or because of the treatment induced menopause. I will still take it as I don't get them all that often, it's just that if I get one, it can hold on tenaciously, and it's exhausting. Also interested to hear of other people's swollen ankles, which I now get, but thought it might just be related to age. I just keep active to keep it under control.
Debbiana
Member
11 years ago
Hi, sorry to hear you are having a rough time. I was diagnosed last December, had my surgery then 8 weeks of radiation before starting on tamoxifen. My oncologist advised me to have the Mirena removed so I did. My surgeon said she didn't think it mattered one way or another. I'm 54 and that was my 2nd Mirena which I had as part of treatment for endo. Lucky for me I think I went through menopause while I had the Mirena. I'd had some hot flushes but nothing horrendous. Since being on Tamoxfen I get hot flushes from time to time and the only other thing I've noticed is I have put on a little bit of weight I am finding hard to shift - just a couple of kilos. Just had my first full check up and everything is fine. Like lots of things, there seems to be different views on what's best. My view is listen to who you trust and do what feels right for you. Good luck. Hope things settle down for you.
becpete9
Member
11 years ago
I've been on Tamoxifen for 3 months and can't say I'm having a very nice time. Hot flushes, night sweats, foggy brain, moodiness, fatigue, the list goes on. I have never felt to shit in all my life. I was diagnosed with breast cancer 5 months ago, had a lumpectomy and 4 weeks of radiation then started on Tamoxifen. I had been on the pill for many years, so stopped taking that immediately. My GP told me that I can't have the pill, the mirena, the implanon, etc and may consider a copper plated IUD, but last week I saw my oncologist and he said the Mirena is fine. But reading previous comments, other people have said they had to have theirs removed? Can anyone provide some further input for me please.
becpete9
Member
11 years ago
Hi, I've been reading this whole forum on Tamoxifen and yours stuck out to me the most. I feel like I am reading about myself. All your symptoms are what I'm getting/how I'm feeling. I've been on it for 3 months and have never felt like this before. The tiredness, the moodiness, and the fuzzy head. It drives me insane. I have two beautiful children aged 11 and 8 and I feel they are indeed on the receiving end of my moods. I know it every night when I go to bed and in turn feel guilty, and tell myself that in the morning I will try super hard to be happy and positive, and think positively about things, but it doesn't take long and I've hit the ground again.

I've also returned to work after a few months and I feel absolutely exhausted but feel I don't have much option financially.

I was diagnosed back in June 2014 at the age of 31. I had a lumpectomy and my lymph node out but the cancer hadn't spread. I had 4 weeks of radiation and then started the Tamoxifen.

Did you perservere with the Tamoxifen? I'm feeling exactly like you. I feel like if I stop then run the risk of cancer again so guilt gets me, but I feel so shit.

Looking forward to hearding from you.

Bec
Helen_a
Member
12 years ago
HI Jules

Thank you for your comments. It is good to know that what I am going through is not unusual - I had a different picture by the surgeon and radiation oncologist who told me that I should breeze through it with little side effects. after all, I had it detected early so treatment straightforward.... :) Thanks for recommendations - the next program of YWCA Encore started the next day so I jumped onto it! now just have to sort out these Tamoxifen issues....wow - congrats on the new baby!....Helen
jules_jp
Member
12 years ago
Hi Helen, so sorry you have to be here in the first place. Congratulations on completing treatment. You and your body have been on a major roller coaster and it will take time for you to get back to a new normal. It is quite common for treatment to mess up with your hormones. It is especially noticeable after radiation, hot sweats and flushes etc. Some women swear by acupuncture/acupressure and others take vitamin E or primrose. It took me almost 12 months to be able to reach into the top cupboards without it hurting my shoulder blade/scapula area. I did some light weights to begin with and worked my way up. I found the sentinel node biopsy just as painful (if not more) than the 2xlumpectomies. Just really take care of yourself - a day at a time with mini goals such as walking or pilates etc, and you will find with each 3 to 6 month - some of the side effects will stabilise. Keep a note (such as when and how often) and mention it to your oncologist on your next visits. We are all different, but I have heard it is quite common to have sore shoulders, niggling throat cough, and sore ribs the first year after radiation. Fyi, Cancer Council run workshops called Living WEll after Cancer and the YWCA Encore have an 8 week swim program for survivors. I haven't yet done the Encore as I couldn't get to the class due to work and now a new baby. Hugs jules