I don't have to take any hormones but I have had chemo and the g-csf injections make your bones ache and so does Herceptin BUT claritin hay fever tablets work like magic. I must have put this up a dozen times but here it is again:
If it can help just take it and pass the news on xxx
Hi Jo, hi Bibi,
Hope you are both okay apart from the joint issues.
I've had minor niggles in various joints since chemo finished. Basically those bits of me that were probably wearing out a bit before this all started although they have all been livable with. So long as I get over the groaning for the first five minutes when I get out of bed I'm usually okay.
However, I've noticed a few times recently when I go for a run (I really don't exert myself, never more than a 30 minute trot around the park) that my joints really ache for days after that, my hips especially. It was so bad last week that I was getting quite anxious. Suspect the only solution is to stop running and find some other exercise.
Hi Welsh lady, I know how you feel! aside from my knees I seems to ache in one place or another all the time! I've got old injurys from my running days which now give me constant problems although my knees are the most debilitating, I don't suffer much from hot flushes as I take an anti depressant called Venlafaxine which helps prevent them , how long have you been on Tamoxifen for? My knees have only started to give me trouble for the past 6 months and I've been taking it since April 2015 Xx
Hi all since being on tamoxifen my fibro has got worse and I am also having terrible pain in my fingers wrists elbows hips knees and ankles and also the bones in my feet, I am also constantly hot all the time I am also having terrible flushes
Hi Bibi , sorry your having problems too, mine click and grind all the time and sometimes lock which is painful to free up, My 78 year old dad has more mobility than me!! 🙈 I'm due for a cortisone injection in my right knee next Friday so I'm hoping that works!
I don't want to be running marathons but have an active life and want to be able to carry on as I normally do, have our first granddaughter due in a few weeks and at this rate she will be carrying me about!! 😂
Have you come off tamoxifen permanently? I was planning a months break to see if there was any improvement but only less than a week in so far Xx
I've been having real problems with my knees, recently diagnosed with arthritis but I'm not convinced it's that alone, they are stiff and sore and just will not bend without a great deal of pain and it's driving me nuts! I've decided to take a Tamoxifen break for a month to see if that helps , have been on them 2.5 years and with a grade 1 tumour I'm beginning to think any benefit I'm getting from them really isn't worth feeling like a 90 year old!! Xx Jo
Optimissy that is such a helpful informative post may be worth re-posting it under a different (problems with lady bits??!!) heading so ladies with similar issues can find it more easily when searching for help/solutions in that "area "!
I'm not on Tamox but Anastrozole for last 5 months and only side effect so far was about the "ladybits". I did a private email to Ask the Nurses, and I paste here what they replied:
Thank you for your email enquiry. Vaginal dryness can be distressing, and is a common side effect of hormone therapy. There are a variety of moisturisers and lubricants that may help, which can be prescribed by your GP, or purchased from a chemist or online. They are designed to relieve discomfort, regardless of sexual activity and do not contain hormones. There are a few products you could try including vaginal moisturisers, such as ReplensMD and Hyalofemme which should be applied every few days, to be effective. Although lubricants are intended to help prevent friction and pain during sex and intimacy they can also be used more generally to relieve dryness and discomfort. These include Yes, Astroglide, Pasante TLC, Sylk and Pre-Seed. Although the symptoms you describe are likely to be a side effect of taking anastrozole you could get checked by your GP to rule out any infection.
Well I bought the Replense and after one application i was fine. You use it about every 3 days though I forget and don't do it as often as that. I don't have a partner so can't judge how OK it would be having sex, but there are the lubricants mentioned above to help with that. I didn't check with gp re possible infection as I was so quickly put right, but it's worth you checking it out as the nurse suggested, as you seem to bein a bit of a bad way in that department. I beleive it may be able to be got on prescription so I will ask when I run out, as it is about £11 for about a month's supply. Hope normal service is resumed as soon as possible! All the best. xxxxxxxxxxxxx
Hi Jill, I've only been Tamoxifen for a month so have only tried 1 brand, Sandoz - I'm in Australia and not sure if we have the same brands as UK, I joined this site as the Aussie sites aren't as informative. I'm hoping as my body adjusts to everything, thing will settle.I have next onc appoint in 2 weeks so i'll see how i go til then. I have a bulging disc in my neck which isn't helping everything else. It causes tingles from my shoulder to my fingertips. It's always there just these little annoying tingles and then they get cold and painful and then settle back to constant. It's debilitating
Hi Jane I can sympathize with you all the things your going through is the same as me hip knee ankle pain also headaches the bones of my feet and fingers get so sore and the pain and itching below is really bad so much so this morning I had a meltdown I cant be intimate with my husband as the pain is too much I broke down crying and told him I dont feel like a woman any more he was so understanding that made me cry more my emotions are all over the place, I have fibromyalgia as well and get foggy brain with that but went over my daughter in laws across the road in my slippers was there for about quarter of an hour then walked back over in the rain mind you she came in and said you forgot your slippers which part of my feet are getting wet did my brain not process lol got to laugh or I will cry, I had lymph node removal and my arm is still numb from elbow to shoulder blade and throbbing constantly I am fed up of bothering the breast nurse and doctors with everything but thought I would feel better after the rads I also felt alone I am sorry your going through this as well but glad to know its not me being silly I just read your post to my hubby and he said thats just like what your going through
OMG, i am the same.. I've only been on Tamoxifen for 1 month. My lady bits are so sore. The itch is insane. I can't even think about "being" with my hubby, I have headaches that come from out of the blue and last for 10 days. My fingers are so sore most of the time it's hard to type. I can't draw or sculpt - which has been a great stress relever over the years.I feel like i am going to fall over all the time because the knee pain is so bad.i have he most awful hip pain that sends numbness down my leg and into my foot.I can''t prepare and cook dinner without being in cripling pain. Nausea is driving me batty and i have brain fog that is awful and i just can't think straight. .I'm almost 4 months post surgery, i had lumpectomy and sentinal node biopsy - they ended up taking 3 as they were suspicius but tested neg. I had 19 treatments of rads recommended BUT had first 4 as boost then onc called me and said because i was big busted, they felt that remaining 15 wasn't enough and wanted to increase it to 25. When i told her i was really disappointed, she offered another solution and it was to keep the remaining 15 treatments but to increase the dose of rads. I blistered and lost all skin on my breast and nipple.. Hubby described it as "a worn out old football (aussie rules)". I have terrible pain in my breast - surgeon says its from rads and onc says its from surgery.. i am sick of feeling this terrible. I'm 46 yrs old and i feel like i am 90.. i am just so sad and feel so alone, i cry all the time because i can't do anything. It's my kids that are suffering they are 10 and 17... Not a life for kids to watch their mum lay in bed and just cry..
Hi ladyblower Mylan is the maker of the tamoxifen im on, not having a good time of it at all now the vaginal area is swollen and feels as if its grazed its that sore I am having trouble sitting down it goes from itching to burning light discharge no odour fed up with all these things its making me feel so low just cant get comfortable sorry to be so graphic in my explanation but going to ring doctor tomorrow if I cant get any luck there will ring my breast nurse
I have been on Tamoxifen for two months now and I have terrible knee pain the joints of my feet and hands hurt like mad and I do suffer with osteoarthritis in my back and also have problems with my right shoulder I also have fibromyalgia which has got worse since taking the tamoxifen I never had chemo only radiation it just cant be a coincidence sometimes my feet are so bad it hurts to walk also the flushes are terrible my poor hubby I keep him awake duvet on duvet off he said it like sleeping with a radiator on full close by lol oh the joys I thought once the radiation and the healing was over with I would get back to some normality but im so shattered all the time I was used to it before with the fibro being lathargic but its got worse I should really give it time as the last 8 months have been hard and sometimes I think I expect too much too soon
Hi, i have been on Tamoxifen over 4 years. I have had knee problems, currently mri shows 3 tears and arthritis in my left knee. My right knee i had 2 ops to repair tears over 3 yrs ago. I have been told its all to do with wear and tear. I have to pull myself upstairs and when at home, come down on my bum, i am 57. Is it due to tamoxifen, has it got worse due to tamoxifen, no one can/will say. I could have stopped tamoxifen to see if they improved, but then the worry about cancer returning would be worse than the painful knees.....Catch 22, as they say! Will have to see if I'm coming off it, as its 5 yrs this year, or will i be advised to take it for another 5 years. ....x
Hi everyone. I have been on tamoxifen for just over 4 years and have started having bouts of excruciating pain in both knees which occurs mainly in the inside of the knee. Can only describe it as being like tooth ache in your knees. I didn't get chemotherapy so I can't blame that. I am 51 but feel like an old lady. The night flushes are horrendous and particularly bad just now as we are coming into autumn and the heating is on, the heating is off then on again. Having battled to lose 2.5 stone I should be feeling better not worse.
i have been using Tamoxifen for 12 months now and my knees have just started hurting over the last few months. i notice that a lot of people are saying the same but the threads are quite old, is this still the case, are there any more upto date threads. it looks like it is the Tamoxifen i guess i just wanted to make sure.
If it's not Tomoxifen has the doctor suggested what it might be? If not I'd press for more info/tests. I did get awful knee pain a few years ago that sorted itself out with wearing shoes/sandals with insoles as instep had dropped a bit and was putting pressure on knee as it was not correctly alligned so I wear Birkenstock sandals alot and use them as slippers too - thought I needed a knee replacement but this sorted it. Seems instep dropping happens as we get older - if you're not "older" then it's probably something else. It might help you too - worth a try until you can get doctor to give more advice? Isn't it diffcult unravelling the bc SEs from other problems!
I have been on Tamoxifen for 4 years in August, I have dreadful knee pain. My dr insists its not the tamoxifen but I never had it before BC and chemo.
I have had knee pain since chemo a year ago - since then I have had a year on Avastin, and have just started Femara, and it has stayed more or less the same during that year. So it is possible it's the chemo and not the Tamoxifen. I'm waiting to see if it worsens on Femara.
You are not alone. Been on tamoxifen 5 years nearly. Family think it's hilarious that I have to push myself out of chairs because my knees hurt so much at the end of the day. It's almost impossible to get up off the floor without help or a chair for the same reason. Saw a doctor yesterday that said " You wont believe how much better you'll feel when you come off the Tamoxifen" I just want to feel 54 not 74.
And guess what, till your post I thought it was just me.
I walk/ramble with poles these days. It takes pressure off the knees and helps prevent lymphodema.
Hello, I've been taking tamoxifen for two years now. My job is standing all day and when I come home I cannot sit down until I am finished for the night because once I have sat down I have to rock my body to be able to stand again. My knees are in so much pain and swollen all of the time. I gained 7 lbs a week during radiation. Now, I feel as if I am trapped in a 99 year old body and I just had my 50th birthday. Am I alone?
I also have terrible trouble in the mornings too. Some mornings I also have to crawl around, because of the pain in my feet. I went to the docs he said I have inflamation of the tendons under my feet. ha ha dont know if this is true, Im seeing my oncologist in a few weeks time and will ask him what is going on with me. It realy is like being trapped in an old womans body, I cant even walk the dog far without having to hobble back.
Im on tamaxofin, and I get terrible shooting pains in my legs, from the top of my legs down to my knees. The pain is sometimes so unberable I cant sleep.
I have just had a full blood test done to see if there is a reason why I am having such joint pain and the results all came back negative so even the GP said it looks like it is the tamoxifen!! I'm going to see the oncologist in a few weeks and I will take the results with me to show him.
I can't live in pain for 5 years so i'm really considering stopping the tamoxifen if the statistics are quite low between taking it and not taking it.
Have you thought about stopping it libby?
I am on Tamoxifen and have horrendous side effects, nausea joint pain depressed bloating stomach pain to name but a few.
Th e oncologist says it's not the Tamoxifen, but I beg to differ on that one cos I did not have any of these symptoms before I started on these.
alia - that is great -there needn't be side effects -I find it quite worrying that people seem determined to expect there to be- and some of the posts on here about SEs used to frighten the crap out of me before I started to take it- maybe I'm just lucky so far like you ? Maybe I'm just insensitive or something ?!
to all you BC ladies out there! I have just joined the forum this morning. I had my surgery in January and radiotherapy finished April and have been taking Tamoxifen since February. I have had no side effects so far but I do try to exercise a bit I go walking and play golf. I have never heard of any of the side effects that I have read on here. I'm worried!
I know that my Doc told me better to take it than not so we always think there advise is sound.
In answer to your question I had 18 out of 20 lymph nodes removed which I have been subsequently been told is classified as an axillary clearance. No nodes were shown to be positive. I don't know WHY I wasn't offered a sentinal node biopsy. Unfortunately I can't ask my surgeon because he has since died.
Have you discussed using any other painkillers with your doctor?
Good luck with finding a solution.
I'm just 49 - I was 47 when I was diagnosed. Tests showed I am now post menopausal.
They've suggested Zoladex because the joint pain isn't as bad. However I've read differently so not really sure what to do. I've started pilates this week and hope that might help a bit.
I'll keep on with the evening primrose oil and hope it has some effect.
Has your oncologist suggested Zoladex instead of tamoxifen? I've heard the side effects are worse on zoladex but I guess everyone is different. If you don't mind me asking, how old are you? is it because of your age that they have suggested it?
I can't remember how long it took but I think it was around 2-3 weeks before the hot flushes stopped.
Take care and speak soon
I'm taking Noveldex too but apparently its no longer being made. I was worse on the generic brand so not sure what to do next. I have been offered Zoladex injections but not sure of the effects of those so have a few weeks to think about it.
How long did you take Evening Primrose for before the flushes stopped. I've been taking 3000 a day for the past week but haven't noticed any difference yet.
That's a shame that's it's codeine as I can't take it. Until I went on Tamoxifen I use to get sore knees if I worked out in the gym too much much only then but this is all the time! But the strange thing is, is that this only came on a few weeks ago... so after I had been on Tamoxifen around 4 months.
How many of your lymph nodes were removed/affected? Mine was 3 out of the 22 removed.
I just want my old baofy back! :-(
The strength of the Co-Codamil I take is: 8mg codeine phosphate and 500mg of paracetemol. There are stronger versions of this drug but they often (if not always!) cause constipation.
My oncologist didn't give me any statistics, he just said I had a much better chance of survival with Tamox than without - in other words "put up and shut up"!
I had a WLE and full axillary clearance with further revisionary surgery to remove margins followed by 25 sessions of rads. Prior to surgery I was put on Letrozole (Femara) which shrank the tumour sufficiently to make more radical surgery unnecessary. I didn't have chemo. I changed to Tamox about a year later. I am two years post diagnosis and eighteen months post treatment.
Did you have any joint problems prior to Tamox?
Don't let the b****** grind you down!
I also take the same apart from the Co-Codamol. Is it codeine based as i'm allergic to it?
Did your oncologist give you any statistics? i'm so interested in hearing about them as they will help me to decide what to do.
Did you also have chemo? some say that it's the chemo that triggers the joint pain but i'm not convinced!!
Take care and speak soon
Another 'victim' of Tamoxifen here! I have joint pain in elbows and fingers but not knees. I would expect weight-bearing joints to be more vulnerable (especially as I'm not exactly skinny!).
50mg Diclofenic Sodium (anti-inflammatory) three times a day
Co-Codamol (2 up to 8 a day) I generally manage on 6 a day
Cod-Liver-Oil (classed as a food supplement)
Glucosomine & Chrodontin (classed as a food supplement)
They keep pain under control but it can flare if there is a cold snap of weather.
I have also had gynecological problems which have been attributed to Tamoxifen. To say I HATE what this drug is doing to me is an understatement but I acknowledge the little b******* is helping keep the cancer at bay.
Good luck ladies!