Hi, I have been reading the blogs for months now and decided to join you all in your journeys and feel that I am one of the lucky ones, who found my cancer early through a yearly mammogram and ultrasound, over 6 months ago, and have since had a lumpectomy followed by a mastectomy for a grade 2 invasive tumor and DCIS. I have my tests done yearly as my daughter discovered she had breast cancer over 5 years ago (she had her checkup a few months ago and the results were all good). I did not have to have Chemo or Radiation and my Oncologist put me on Letrazole with side effects of bone and muscle pain, nausea, giddiness and brain drain. My Oncologist has now changed me to Tamoxifen and I dont know whether I have jumped from the frypan into the fire. I now have pain and swelling in my legs and ankles making it painful to walk, fluid retention and weight gain and a painful Vaginal Itch and soreness. Of course the tiredness goes with both medications. This makes you feel depressed in not being able to function normally and get back to my normal life activities. Knowing others are suffering more, it makes me feel like I am complaining unnecessarily. Has anyone had this same experience and what can I do. Take Care xx

Hi Carole, You are definitely not complaining unnecessarily. This is a great place to seek understanding and maybe minimize some of those awful side effects that many of us experience. I was placed on Tamoxifen after my treatment back in November 2013 and stayed on it until I had my ovaries removed last year. I then changed to Letrozole (Femara) last October. So kind of the reverse of your situation, I guess. I was fortunate to not experience many side effects on Tamoxifen except for some mild nausea to begin with and then some fairly unpleasant mood swings. I don't know if it helped but I did exercise regularly (just a daily 30 minute walk) and also really watched what I ate. I avoided alcohol and caffeine to help with some mild hot flushes. Nothing helped the mood swings though! On Femara I felt instantly calmer but very tired and about a month into it, incredible muscle and joint aches. My brain fog was pretty bad too. I was to the point of thinking about asking to change back to Tamoxifen as I was concerned about how the pain was affecting my ability to function. However, I persisted a little and tried increasing my magnesium, fish oil and glucosamine supplements. Somewhere about the 3 to 4 month point it all started to settle and the joint pain is only mild now. I am just a bit stiff until I get going and then I can do pretty much everything I want to. I did also start doing some extra weight bearing exercise and think this has really helped my joints. I have heard lots of ladies recommend yoga too. My oncologist and a few ladies on here told me that it can take about 6 months for the side effects to settle. My osteopath also said in her experience with breast cancer patients, any change in medication can cause an inflammatory response. Maybe this is what is happening with your change to Tamoxifen? All my doctors recommended I give my body time to adjust and for me that has ended up working. It was not pleasant to go through though! Hope you get some helpful advice from everyone on here who has some experience with this situation too. Take care. Deanne xxx

Hi Carol, Firstly Welcome! Thank you for sharing your journey with the Online Network. As Deanne has mentioned you are definitely not complaining unnecessarily. As you would have seen the members are just wonderful and they will share with you their experiences. Good to read that your daughter is doing well x ~ Ann-Marie

Thanks Deanne. It looks as though I need a little bit more patience and perseverence. xxx

Thankyou Ann-Marie for your kind thoughts and concern. xxxxCarole

I just remembered that when I was on Tamoxifen I had a different brand once as the chemist did not have my normal one. I had much worse side effects (body aches and very emotional) within days of taking it. These went away instantly when I managed to get hold of the one I was used to. Other women on here have also had trouble with certain brands not suiting them as much as another. Unfortunately it can be very individual (no one brand is good for everyone) but it might be worth trying a different brand if your side effects are not improving. Hope it gets easier soon. Deanne xxx

Tamoxifen and Letrozole side affects

19 Replies

primek
Member
9 years ago
Oh you poor thing. How awful. You might have oral thrush as well by the sounds of that tongue. Uggh. I hope you feel better soon. Rest up and look after yourself. Kath x
librarycat
Member
9 years ago
Thank you for your help. It turns out I have a load of cold sores inside my mouth along the gums top and bottom, under my tongue and in my throat causing extreme pain to nerve endings. Also, 'geographic tongue' where top peels off unevenly & looks like a map. Being treated now & improving. It developed because I am run down ( who isn't ) after chemo & going straight back to work and has nothing to do with taking letrozole but the timing was suspicious. I am relieved.
Brenda5
Member
9 years ago
Have you been sleeping with a fan or aircon blowing on the sore side of your face? Could be you need to redirect the fan? My neck glands seem to go up and down at the drop of a hat so I have stopped feeling at them as it only worries me more. I have been on Tamoxifen almost a year. If I have any odd symptoms which last for more than 2 weeks, I go to the doctor and get it checked. Most things disappear before the two weeks is up and I forget about them.
Deanne
Member
9 years ago
Hello @librarycat,
You have posted on an old post from Carolemj and people have missed your query.
Yes, your teeth being sore on one side might be related to starting Letrozole but it might just be because you are a little stressed about starting Letrozole too. Sometimes when we are stressed or anxious about something we clench our teeth unconsciously and this makes them sore.
I have been on Letrozole for about 18 months now. It tends to mainly cause sore joints for me but that has improved a lot over time. I have found a number of things that seem to help. Talking with your oncologist about your side effects is a good idea.
Hope that your teeth settle. Try to do some nice things that you enjoy and help you to relax. If you do end up with some side effects there are things that can help and often they do settle with time.
This network is a terrific source of information too and there are lots of us on Letrozole who can give you ideas from our experiences too.
Take care and let us know how things go for you. Deanne xxx
socoda
Member
9 years ago
Hi Carolemj, I've now been on tamoxifen for a whole 8 months :). My hot flushes had settled down and now have flared up again. I play on and off again with my sheet and cotton blanket of a night time. My psycho mood swings have gotten a lot better (I think before I snarl now!!) Tears still tend to flow whenever they feel like it but it's really only when talking to others about their treatment and what they have been through. I don't have swelling of the legs although do suffer from sore knee joints and the ball of my left foot aches(? don't know why just that side?)I get tamoxifen brain (use a phone app called elevate to counter act this) and start the day off with a normal size stomach which swells as the day goes on (and is totally unrelated to the amount of food or fluid that enters my mouth!) I have just been to see my gp regarding high cholesterol and have also been given a tablet called Fluconazole for vaginal thrush which is a one off tablet. I'm still so incredibly lucky as no side effect is so severe that it will stop me from doing exactly what I want. Wishing you all the best. Xx Cath
primek
Member
9 years ago
I had terrible joint pain initially on ketrozole but it really has improved, particularly with exercise. The swollen feet are an issue and I believe you should have a review to ensure it is not related to another health condition like high blood pressure, rhematoid arthritis, heart failure or kidney problems. Most likely it's not but always a good idea to exclude first.

Hope things improve for you. Kath. X
nikkid
Member
9 years ago
HI everyone,

I use 'GenRX' Tamoxifen like your oncologist suggested Carole. My oncologist said that different patients 'liked' different manufacturers of Tamoxifen - so whenever I renew my subscription, I ask the chemist to order in the GenRX version. I haven't tried any other versions, but I'm happy with this one. Major side effect is hot flushes and maybe a bit of joint pain. Doing pilates and walking (and sometimes even running when I feel up to it!) certainly helps with any aches and pains. Sometimes I also feel like my brain is fuzzy. Other than that, it's been pretty good.

Take care Nikki xx
librarycat
Member
9 years ago
HI Everyone

This is my first post to this forum. I started taking Letrazole 1 week ago and now have extremely painful teeth on one side. Went to the dentist last month so know nothing is wrong with my teeth. Nurofen and Panadol don't help and I have just taken Panadeine which helped a bit but i can't take that for ten years!

Do side effects like these wear off after time? I am seeing my oncologist on the 3rd but she is away at the moment and thought somebody may be able to shed some light. Thanks.
Carolemj
Member
10 years ago
Hi Rowdy

I really didnt know there was so many different brands.

Firstly with the Letrazole, I was taking Femolet, with not good results, but my Oncolgist never suggested a different brand and changed me to Tamoxifen. The brand is GenRx.

Perhaps because I am older, 72 years, some medications react differently.

Thanks
Carolemj
Member
10 years ago