I was just having a look round the thread and saw this. I've been on Tamoxifen for 2.5 years now and this year have been suffering with what I thought at first might be oral thrush. My tongue constantly feels like I've burnt it and sometimes the roof of my mouth and the corners of my lips tingle something chronic. After blood tests (all clear) and 2 rounds of thrush treatment I'm no better. The GP dismissed my question about it being Tamoxifen. After reading this thread I'm not so sure!!!
I also get hot flushes where I'd happily strip off, pain in my legs and I've had a shocking amount of weight gain.
Still pushing on with it though.
Amazing! I wasn't looking for this, as I had just come back on to 'look around'. I have irritating little blisters around the edge of my tongue, but I also have the feeling of a lump in my throat and tightness around that area. I know it isn't another cancer, but I wondered if anyone has this too.
On the question of Tamoxifen after menopause (which someone asked, but I can't find it) my oncologist said that she prefers to put everyone on Tamoxifen for two years, just to establish whether they are really post-menopausal or not (as the effect of chemo can skew the test results). Then, if after two years it is clear that the patient really is post-m, she switches them to Arimidex.
I'm off to try all the suggestions in this thread!
Found this really interesting. I have been on Tam for 9 months and have a burning sensation in my mouth, sores at the corner s of my mouth and I have also had to avoid spicy food. Didn't think it might be Tam but never had this problem before.
I've just noticed that this thread has popped up again so wanted to add that I still get blood blisters in my mouth and just have to be careful of sharp food such as french bread (a total no-no) and chips etc.
As for cracks in the corner of the mouth, I had these for ages, and believed it to be angular chelitis, but I aslo had eczema on my face, made worse by sweating through flushes. My GP gave me Fucibet cream for eczema (which I belive is antibiotic and anti fungal) and, hey presto, the sore corners have completely gone. I ddin't realise how sore they were until they healed.
Good luck! Bella x
I finished Tamoxifen in 2009 and didn't have the side effects that you have but after Tamoxifen I was put on Femara which I have been on since April 2009 and after 6 months of Femara have been suffering from problems with my mouth for nearly 2 years which started as dry mouth but have increased over time.
My symptons are
Burning feeling in mouth and on tongue
My lips are very sore and I have to be careful what I eat i.e spices etc
Pain down front of chin
What looks like thrush on lower lip
Sores on corners of mouth
Small cuts inside lower lip which are very sore
The hot flushes have increased to at least 4 a day
Things I have tried
2 x antibiotics
2 x thrush treatment
2 x bloodtests
Sodium lauryl sulfate free toothpaste
Reducing sugar/wheat from my diet, also listed what I eat each day
Tried increasing various vitamins including Vit B complex
Drink at least 2 litres water every day
No longer drink alcohol at all(would only drink two unit a month prior to this if any)
Sucking ice cubes is the only thing that helps.
I spoke to my Onc in April who "surprise, surprise" said that he had not heard of this being a side effect even though it is noted as a side effect on the leaflet with Femara. Anyway he agreed that I should take a break from Femara of 6/8 weeks which I did, made a bit of a difference but once I went back on it the symptons did increase.
Anyway yesterday I went to a Oral and maxillofacial clinic where it has been suggested that it is Burning mouth syndrome which I was told is not curable but the symptons can be treated with drugs and Amitriptyline was mentioned. He said that I was a difficult case because BMS usually effects the tongue which hasn't really affected me.
I had previously been on Amitriptyline since 2003 to help the pain in my arm after surgery and had voluntarily come off it as this can cause a dry mouth.
Burning mouth syndrome is quite common in post menopausal and effects up to 1 in 3 older women. Now whether it will go away in time or when I stop the Femara, I don't know but my Onc wants me to stay on Femara for anothe 2 years if not longer.
If you can live with it thats fine and it might be only temporary for you but I did leave my job in February because it was just getting me down after nearly 2 years and along with the long hours I felt I needed a break.
I haven't heard of anyone else with these problems so I might just be unlucky I suppose.
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I came across this thread because I starting searching for a link between mouth ulcers and tamoxifen. I've been on tamoxifen for 4 months now, and am for the first time in my life, afflicted with cracked mouth corners, ulcerating gums/roof of mouth when I eat.... acidic fruit or spicy food in particular. I can live with it, and use corsydil and bonjella, but I was curious as to whether this was a side effect. I'm taking extra zinc at the recommendation of my pharmacist, but that's made no difference. It can be linked to just low immune function (I had radio not chemo), and I wonder if it's linked to the hormonal changes tamoxifen creates? I dose up with multiple vits, extra B's, C's, magnesium and flouradix for iron... so I can't believe there's a dietary deficiency?) Any one else had this problem?
Hi BelleLasagne thankyou for you reply as sometimes you start to worry over nothing, especially with all the adverts about mouth cancer and other cancers just because we like to have a drink. I am begining to think that even my one night out a week is not doing me much good. I had cordysyl prescribed whilst on chemo and like you never had to use it. Whirlwind I usually have the same brand tamox as you and then sometimes the chemist has a different one i must say i have noticed much difference but maybe another one might suit me better. many thanks love Sandra
Thanks for the quick reply.
Since Sept. 2008 I have been on Methotrexate, they started me on 3 x 2.5 gram tablets once a week. I am up to 5 now.
Of course, before and after my operation I had to come off them.
Since going up to 5 tablets one of my blood tests is coming out a bit on the high side. I think it was up mainly over the xmas break its possible it does have a link with alcohol intake. I don't normally drink that much but probably had more than normal then.
I have blood tests every two weeks which is awkward as like all of us only have the one arm to be punctured!!! And I don't seem to want to give any blood away. My nurse normally has to take it off the back of my hand!!
In fact, when I go for my first foot operation I will have to make sure that they do no testing on my bad arm.
I would try and go back to swimming but walking on bare feet is quite painful.
I live in trainers - except tomorrow I have to go to a University Interview meeting with my daughter and will have to be presentable.
I was just trawling through the latest posts and came across "weeing more because of Tamoxifen" thats quite interesting as a couple of months ago had a really bad back, started going to Physio at the hospital and I said then that I was having problems with my waterworks. After being given some exercises to do, my back ache has gone and my waterworks seem to be improving.
Gotta get my outfit ready for tomorrow.
ps what side effects does it mention on the Tamoxifen leaflet?
Whirlwind, I think that as you have RA (my son has ankylosing spondylitis since 12 yrs old) I understand some of the pain you go through and what it does and if I cannot walk in the morning or hold a cup for an hour or two then I really feel for you. I am sent for blood tests every three months for liver function as this can affect joints as well. I have soft tissue on top of my feet that are really painful in shoes and apparently all this is Tamoxifen - I was fine before this so I think for you it will just compound the problem. The weight gain (mine is 2stone) is also Tamoxifen and as you rightly say the less movement over a few months.
Lets hope when you have your toes done then walking will be joyful again and get you out and about more.
I started with some bad SE but now the hot flushes and nightsweats have all gone. I think we have to work out our solutions and how to get around the problem as there is no blueprint.
The rash is difficult as I work with the public and I am trying to keep the stress levels low. I also have psoriasis so that doesnt help. I used to have trouble swallowing food and it seemed like trapped wind all the time but now that has eased too. I am going to persevere with Tamoxifen to see where it leads.
Hope your all ok today and taking things easy - one day at a time.
Yes Sandyoak, I do!
I regularly get blood blisters and have to be very careful about what I eat. I can't eat anything sharp as it wrecks the inside of my mouth. I ate a sharp chip a couple of weeks ago (I know, I shouldn't eat chips, but it was a treat!) and chocked on it. On it's way down it scratched the inside of mouth, my throat and the front of my oesophagus. I was on antibiotics for a week and it took 10 days to heal.
I've just started using Cordosyl as I remember the nurses giving it to some of the chemo patients, and I've made an appointment with my dentist for a checkup to see if she can help.
I've only had this problem since I've been on Tamoxifen I was fine (mouth-wise) through chemo.
Thanks for the advice very prompt.
I also suffer from Rheumatoid Arthritis and this as you probably know attacks the joints on your fingers and toes.
So I wouldn't really know if the Tamoxifen is affecting that.
I only usually get hot flushes. When I used to take tablets at lunch time you could guarantee every night being woken up with feeling of hotness. So I take them now, later at night time before going to bed. This seems to work quite well for me.
I have other medication to take so hopefully they will all work together.
Am due a foot operation shortly to put my toes back to where they should be. Have put on loads of weight (wasn't light in the first place) due to not being able to walk that well. The weather hasn't helped either.
ps Perhaps the SE's don't all happen at first presumably it all takes time.
Whirlwind, I was already post menopausal when I started taking Tamoxifen. The only side effects I have after nearly a year of taking it is joint pain (ankles and fingers) and tiredness, with some nausea.
I have had Tam rash on the outside of the mouth and chin area. Bubbly and red and raised skin. The consultant said Tamoxifen and the GP gives tablets and hydrocotisone.
I think you should see the doctor and explain about Tamoxifen rash and see what he says.
I tried to get support by creating a thread but not many takers. Its not a very nice rash and people might not want to comment.
I wish you well and please let me know what the doctors says. He will probably give you an anti histamine like the one I take.
Keep safe and God bless
I have only been on Tamoxifen since May 2009. It doesn't seem to affect my mouth.
I remembered reading on here last year, that there was a particular brand of Tamoxifen which didn't seem to give out so many hot flushes/SE's etc. I see that they have given me the WockHardt ones this time, and the hot flushes have started again.
Unfortunately, can't remember which ones I had last month but the hot flushes were diminished.
Should have written down the brand name when I saw it last year.
Why is it so important to take it at the same time? I'm afraid the flushes were so bad a few months ago that I had to change the time completely, I was taking them at lunchtime but now I take them quite late before going to bed.
Does one stay on Tamoxifen for the 5 years even if one goes through their menopause?
Hi can anybody tell me if they have a sore mouth whilst on tamoxifen, I have been on it for about 2 years now and often get mouth ulcers. One side of the inside of my cheek feels bumpy when i run my tongue over the area and today two blood blisters have appeared. Many thanks