Sorry you are suffering this Lyn, I get tingly fingers but only on the chemo side, are yours both? I have been blaming chemo damage causing Carpal tunnel Syndrome. My sister has a totally non-cancer related disease which makes her extremities feel like they are burning, and this is due to nerve damage as her white blood cells attack the nerve cells. I think you should just be aware of how it is developing - getting worse/better and definitely go back maybe to GP rather than Onc.just to put your mind at rest. I think someone else on this website ended up with Carpal Tunnel Syndrome, you could try a search in the boxws above, remember to click in the 'comments' not 'topics' circle.
love Zoe x
I am new to this forum and would love to hear from anyone who is on arimidex and who is experiencing tingling fingers as well as the usual aches and pains.
I have been on arimidex since sept 08 after my chemo treatment but its just the last 6 weeks or so that the tips of my fingers feel as if they have been burnt. I have asked my onc and have just been told to take ibruprofen but they have had no affect.
Be great to hear from you
I've had loads more hot flushes again (especially from teatime onwards - 5 in 3 hrs yesterday evening while watching tv and then woken up every hour during the night !) the last 2 or 3 days and I reckon it's because the weather is milder.....but the joints haven't been quite as bad. If it's any consolation, my physio told me this morning the hot flushes use up loads of calories - result !!!!
Zoe - I'm getting in training for the picnic/walk - went out for a stroll on the prom on Monday and on 2 bike rides yesterday. All very gentle, start easy and work from there. Shelters on the prom are few and far between these days but no matter and deffo put a cave walk on the agenda !
Yes the surgeons are worth evry penny! Mine was Mr Najim. Lovely man....kind and not at all arrogant.
The picnic WILL happen - even if we have to sit in those little shelters along Morecamb front in the rain! Or we could meet in Tordas cave which is enormous, I think you would all love it, its walk-in-able. Had loads of hotties today, just when I thought they were going away. There is no pattern to these symptoms, they come and go, get better then worse..is it because our own remaining oestrogen levels fluctuate? Why is it your feet one month then your hands another? I think when the year is up I will seriously think about half a tablet daily...
Love to all, Zo e x
English - hope you see this thread. Interesting about taking half a tablet from Zoe just above.
Perhaps ask your breast care nurse to chat through - ours are great round here.
Don't read Westmorland Gazette but Mum told me it had been in national papers before Xmas so I googled it and don't know how I missed it. I've worked out it was a man cos it said he (!!!) and that he worked in the University of Morecambe Bay NHS Trust breast surgery unit. Not sure how many men there are but if it's mine he's worth every penny in my book - fab with the knife and needle, always sees me and is very understanding especially with the work hassle I'm having over my retirement app. Couldn't wish for better. I'll search the West Gaz to see if it's viewable online....
Picnic seems a long way off weatherwise again today doesn't it ????
Lizcat - my surgery was at Airedale, but my rads at Preston, so I saw Dr Skailes late...but I really think she is smashing. Rang the BC nurse who said keep ging, but we talked a bout half a pill instead of one....but of course that has to b my decision....does anybody read the Westmorland Gazzette? did you see the article about an un-named breast cancer surgeon who gets 'paid too much'? Not if you ask me! I could have kissed Mr Najims feet when I woke up without the tumour 🙂
love Zoe x
I took Tamoxifen for 2 years. It was then certain I was post-menopausal, so I was switched to Arimidex.
I put up with it for 9 months - I stuck it both hoping the symptoms would lessen and because I had an appointment with my Onc at the end of July.
By then I was determined I wanted to change back to Tamoxifen, even though I know they work differently. I could hardly move in the mornings with the stiff joints etc - all as you've described.
However, she persuaded me to try another aromatose inhibitor (instead of the tamoxifen) as she said they do work in different ways and for post-menopausal women they give the best results.
So she switched me to Aromasin, which she said reported much less side effects. I still find my joints are stiff in my fingers etc when I get up, but I am so much better than I was.
Please discuss with your Oncs about changing. I know we're all sick and tired of it all, but we do have some control and it's worth nagging rather than just putting up with stuff simply because we feel we have to.
Love Caz xxx
Thank you so much everyone who has posted here. I've been taking arimidex for nearly 3 months and am finding hot flushes and very sore legs and hands very difficult to cope with. I feel churlish to moan as I know it is giving me a better chance of seeing my kids to their old age. I take paracetamol to help at night and MMS, glucosamine and omega 3 oils. Is there anything else |I should do? I'm concerned to read about raised colesterol as my Dad had vascular dementia with early onset which is ( i think) linked to raised colesterol. Now I'm back at work I don't have time to keep going to GP or to hospital for blood tests (2 busses and long sit and wait clinic, my surgery doesn't do bloods). I wish I just had a tick list of this is what needs checking regularly, this is what you could take/eat that may help. I have found that walking my dogs helps the legs but I stiffen up so quickly I have to hobble around at work looking like the old lady everyone mentions.
Just to ask as well, the nurse at the GP surgery said "arimidex that's better than tamoxifen isn't it?". Is it? My Mum took tamoxifen when it was a newish drug for 6 years and then got a 2nd primary BC BUT has very severe osteoperosis from arimidex. Maybe someone could start a thread on what helps with side effects? I'll do it if no one else can but not today as should already be dressed and out the house!
Is Dr S your oncologist ?? Be interesting to see what she says .
Hasn't it been a miserable day today - damp & gloomy. Roll on better weather for our picnic !
Exactly the same Zoe. Yes be interesting to see what your Onc says. Oh i also have no ovaries. Good luck.
Thanks everyone for all your sayings; I still feel the same, but it helps to hear your voices. Hope it also helps Suzan......5% seems worth the risk really, Jo. Maybe I am at the same stage as you? I had a lumpectomy removed, sentinel node biopsy revealed no spread at all, and I was grade 2 not 3. Must go and see the oncologist....love to all, Zoe x
Just to put the other side of the coin - I have been on Arimidex for 4 months with no pain, joint stiffness, skin irritation or any side effects. I have a friend who has secondaries in her liver and since she has been on Arimidex the tumour in her liver has reduced in size by half, as has her tumour in her boob!
sometimes I dont know whether to laugh or cry my hair has come back grey after the chemo and I look and feel ninety, I have been taking arimidex for nearly 3 months now, I hobble around like an old woman, tried to put my tights on this morning got one leg in but boy was it hard getting the other one in, feel tired all the time but dont sleep very well.. First time I was diagnosed I took tamoxifen which gave me such heavy periods I couldent go out was flooding all the time, eventually had to go in for an operation as my womb lining was so thick and had a mirena coil inserted, surprise surprise the next cancer was progesterone positive and so they whipped it out double quick. If I could just feel good it would help went out for a meal xmas eve and kept thinking about how stiff I would be when I got up, and I walked out of the restaurant doubled up cos I was so stiff.people think once you have been treated that its over ,far from worrying about the cancer coming back there is also the quality of life issue when you have to take drugs for a long time, sometimes I feel my life has been taken away from me I am not in control anymore amd feel jealous of healthy women with nothing to worry about best wishes to everyone love suzan x
I decided to stop taking Arimidex September, i had been taking it for 6 months previously been taking Tamoxifen for 6 months. I'm not saying it is right for everyone, but i felt my quality of life was so poor and i just got totally fed up feeling crap all the time.
Onc said life expectancy is reduced by 5%, but i feel so much better back to work full time and enjoying life again.
Of course i have scared moments, but i got them anyway.
Wishing you all good things for 2009
Oh, Sarah and Liz - this sounds terrible but its done me good to hear that you are both feeling the way I am! Really struggling with the whole thing right now, take the chance of shorter life without all this pain and stiffness, brain deadness and tiredness or keep going another 5 years on it. until I am the size of an elephant...I just dont know what to do. Was at least aiming to finish one whole year, as any time on arimidex is better than none. Will think of you as I lie in bed tonight trying to find a comfortable position. 🙂 I can only say the Glucosamine with Chrondroitin and MSM does help, paracetomol makes no difference, and I really would not like to start on the antidepressant routine, but it may help you Sarah?
Much love to all, ZOe x
I have just posted this on another thread about Arimidex, so I thought I would copy it here too.
Like you I'm on arimidex, I was on Tamoxifen to start with, for about 8 weeks and when I complained about the side effects to my onc, sweats, pain, hot flushes and weight gain, she did a blood test to transfer me to arimidex, to see if I had gone through the menopause, she then found out that the weight gain was due to under active thyroid so now I'm on thyroxine and the arimidex. I have been to my GP 3 times about the symptoms of arimidex, the severe hot flushes, pain in legs and back (can hardly walk first thing in the morning I hobble around like a 90 year old!!!) I also have the carpal tunnel in my hands they spend most of the night asleep and tingling, where as i'm awake and sweating, I've also put on 8lbs since Sept, (12lbs since July ) it is driving me nuts, the GP said I was on them for a reason yeh right well I know that!!! She did say in Dec come back in Jan and she could fax the onc to see If Tamoxifen is better, I'm not seeing ONC till March. I have taken the Glucosamine with Chrondroitin and MSM and I did find that helps I also took Red clover blossom for the sweats which was good then I read on here that you should not take it as it's full of oestrogen the thing we are trying to avoid!!
The GP prescribed me Cylizine then I read they make you sick and tired and I thought well no more of those symptoms else I'll be asleep 24/7. I also take Co Enzyme Q10, the jury is out on that too. I find also that I am fatigued all the time but is that thyroid, Arimidex or post Chemo?
I hate Arimidex and its symptoms, then I think well I hate BC more. I just want the life I had before Dec 07, when I was DX but that is never going to be is it?
I feel really quite depressed with the whole thing.
Zoe - justed posted on 'our' local one and now seen this one. I've noticed I've become a lot more ratty and horrible over nothing - Paul puts up with it and tells me to count to 10 (or 20 !!). I've also found it difficult sometimes to open jars, lifting kettle and seem to lose strength in hands, plus pain in thumb joints and knuckles. I only started it in late Sept and because I have the small bone mets must persevere !! Onc told me to take paracetamol twice a day even though I wasn't keen - don't want to take too may pills - but my pains are nowhere near as bad as yours obviously. Hope the pains subside very soon and that this has just been a blip - wonder if the colder weather has anything to do with it ???
Everyone else - it's the hot flushes that are the worst for me and at the mo I'm grateful for the colder weather. I seem to get anxiety attacks just before the hot flush and don't know what to do with myself. I've learnt the art of layering and try to make light of it but it's very difficult. Oncologist suggested I try paracetamol for the joint aches and they might help the hot flushes but no joy - anti-depressents have been suggested as a poss option so what does anyone else think ?? Back at onc in 3 months.
Fingers crossed for improvement, Liz x
Hi Mounties, your post really raised my spirits as I am desperately unhappy on this arimidex and on the verge of packing it in..although all the vits I tke had made it better, it has suddenly come back with a vengence in my hnds, cooking, trying to do my job, even doorknobs are a nightmare. Being really horrible and ratty to OH as well......how long did you take it before you stopped? I was told that if I could stick it for 3 years that would be ok as the 5 years is a safety margin thing.
Good luck , Zoe x
I stopped taking Arimidex a month ago now and the difference in how i feel is amazing. The aches and pains have gone, i feel more like the old me prior to bc again. The sex drive hasn't coome back again but i do feel femonine again as opposed to when i was on the arimidex i felt like an old lady with all the aches and pains i was experiencing, some mornings i couldn't get out of bed and i was taking loads of painkilers, which weren't doing me any good. I did tell my Gp who spoke to my onc and he told me i was reducing my chances of making it to 5 years by 20%, but i will accept that risk just for the feelings of being pain free and feeling younger then i did on them.
I posted on this site quite a while ago and have just re-visited. I take glucosamine, have started to walk a lot more and also do tai chi. Although I still have aches and pains (some days much worse than others).i have found an improvement. Id I sit for too long I am worse. Still cant do a full days housework though. Haven't had a good nights sleep in ages either due to flushes, back and feet pain.
Went for bone density scan last Thursday so wait and see what results are.
It is miserable I know, but I haven't got the guts to stop taking them!!!!!
Hope you all have a good Christmas and great New Year
I have just found this thread. I have been on arimidex for about a month now & it was reassuring to read your comments. I am suffering from hot flushes through the night, bit pissed off as I did not go through them during menopause. I found that my joints are sore in the morning & also feel as though I am 80 not 51. I have found Pannadol - night pain helpful last thing at night & use paracetamol during the day. I try to be up before 9 in the morning but feel terrible until about 11am then I pick up & rest ( but not sleep) at 4pm. I have found that if I do a gentle bit of yoga that also helps & start to get ready for bed about 9pm. I suppose it all help.....!
I hope you all have a good christmas & hopefully things will ease in 2009
I'm really glad I found this thread as I thought the unbelievable tiredness was all in my mind and my GP agreed. I don't think side effects even crossed his mind. I have been on Arimadex for 4 years this month. The hot sweats have finally got a lot better. I have joint aches in my hands and elbow particlarly on the side where I had my lymph glands removed, also stiffness in the mornings, but maybe that's just age. Reading about other people's joint pains, I realise mine aren't that bad.
I'm partly writing this to distract myself as I'm going for day surgery tomorrow to have a final adjustment to my reconstruction - strangely I'm more nervous about this than the original mastectomy. I suspect this is because I don't feel this op is entirely necessary.
Thank you all for cheering my up about the side effects, that's a load off my mind.
I was on tamoxifen for 2 1/2 years and now on arimadex about 6 months they said the sweats and flushes would not be as when on tamoxifen not quite as bad but bad enough my consultant refered me to hospital to have accupuncture must say the sweat have got alot better. came back with vengence when i changed to arimadex but they now are under control again. I do have painful joint aches in my hands. at night its my hips and feet carn't stay in bed with them have to get up.also now ive had my reonstruction this year i'm now tring to move the weight i've put on joined weightwatches 4 week ago managed to lose 8lb. i just think put up with it and hopefully when the medication stops all the aches will go away i live in hope!!!!!!!!!! joanx p.s. merry xmas to all and a goood new year to all
Sorry it cost you so much Wendy, hope they do some good. they really have made me tons better in the joints...still stiff now and again but no pain at all. I buy combination pills as above, but hey dont cost me nearly as much. I get them from healthspan 360 for Â£17.95. Hope I'm allowed to send this!
Keep moving 🙂 love, Zoe
Just thought I would let you know that I took the advice of someone else on this forum and bought some Glucosomin with Chondroitin and MSM (expensive at Â£57!!) but thought it was worth a try as, like most of you I feel 90 at the moment. Well, have been taking them for 6 days and I think they are starting to work already. I have still got some aches and pains but they seem to be easing. I will keep you all posted!
Take care all.
hi narnia sorry you have awful aches and pains and I feel reassured cos since I have been on arimidex I have had same pains in knees and hips and lower spine I dont want to switch either just wish I could find a solution to it, everytime I sit down I stiffen up again I feel so old best wishes suzan x
i have had awful aches and pains in my joints (particularly knees, hips and lower spine) for the last few days.so now take a couple of paracetamol with my arimidex first thing and top up paracetamol as the day goes on.Also, fingers seem quite swollen today. Is it likely to get worse as time goes on? It's already not much fun 😞 bcn did say if i get too many side effects, they can put me on something else, but didn't say what....................and if arimidex is the best, i'd rather stay on it, but don't like this pain!)
hi olivia I dont blame you for having a few glasses of wine when you get home must be tough with your husband in a nursing home.Did it come as a shock to you when you found out you had bc again I thought it was all behind me after all those years just shows you cant be too complacent,no rads either as had them first time around I am 58 so was 39 first time, take care best wishes suzan x
To Rachy7, yes I am very oestrogen positive too, but the doctors and BC nurses said the vagifem treatment was really low risk, as it was so local; and it was certainly worth the benefit down below. Still taking the chondroitin and MSM which is making the aches and pains far far less.....hope everyone managing. YEs its awful, I just keep reminding myself its better than not being around!
Love Zoe x
Suzan - like you it was in the same breast and near the original scar. They didn't tell me if it was another primary or a recurrence - maybe they are the same but will check. Was not offered chemo just Arimidex for 5 long years. Can't have rads twice to same breast so fingers crossed. XX
hi olivia me too havent had a good nights sleep in weeks only been on arimidex for 6 weeks its either running to the lou or aches and pains feel like I am ninety. This is the second time I have had bc as well after 18 years they werent sure if it was a reccurence or a new primary but it was in the saME BREAST AND ADJACENT TO THE SCAR, DID THEY TELL YOU WHETHER OR NOT THEY THOUGHT YOURS WAS A NEW ONE AND DID THEY OFFER YOU CHEMO BEST WISHES SUZAN X sorry pressed capitals by mistake.
Have been on Arimidex 18 months and cannot remember the last night I slept through. I wake every night 2 or 3 times either damp or absolutely drenched. I drink a couple of glasses of white wine most nights and don't think this helps but hell, I am 70, have had BC twice, my husband is in a nursing home having palliative care and I need something when I get home at night to cheer me up. Some nights I get up 3 times to go to the loo, others once. How I hate this wretched disease but there again there are millions of people worldwide suffering far worse. Enough moaning - have a good weekend everyone XX
You ladies who work full time are fantastic, i only work Sundays at my local Edinburgh Wool shop and i spend most of Monday totally whacked, I just don't know how you do it. I always feel guilty that i only do 6 hours and my poor hubby does on average 105 hours a week to pay our 3 mortgages! Going to do a bit extra in the run up to Christmas the late nights and boxing day and new years day so hopefully that will add a few pennies to the overstretched finances. Hope you really relax and chill out when you are not working.
Hi all me too... Feel quite down today, always feeling unwell is getting me down. Work full time and finding it a struggle.
Sorry for the moan just one of those days.....
Hi all I just thought i'd join in too as I seem to be having most of the same problems especially aches and pains. i wake up each morning and wonder which bit will ache worst today. I am also having urgency problems and too many nighttime loo visits and I also thought it was my age. Oh well only 4 years and 9months to go! love to all Jenny
Oh wow, so stress incontinence is a side effect of Arimidex, another one, what a relief to know, as i have been suffering from bladder problems since starting and was far too embarrassed to mention it. Anyone else get up 7 times a night for the loo, it is seriously affecting my sleep, i walk around all day like a zombie! Hot sweats, bone aches, now incontinence, what a drug! Still i met my pharmacist in Marks yesterday and she says she read the more side effects you have the better the drug works at preventing recurrence! Lets just hope and pray that is true, though my cousin was on Tamoxifen for 5 years with no side effects at all and 10 years after diagnosis has never had any probs at all.
There are tablets for the bladder that can control the contractions of the bladder called detrusiol.
oh i thought it was just because i was getting old , but now come to think of it im getting problems down below as well ,if i need the loo i have to go there and then .maybe i will see what my doc recommends ,just thought it was down to old age .im 58!!! lynnx
I am so pleased to find others suffering from the embarressment of stress incontinence due to arimidex. I am 39 and feel like an old lady with this and the aches and pains.I cannot use anything with oestrogen in it as my bc is 100% oestrogen receptive. Any ideas to help with this ?
Anthi, I am on 25mcg and after the first week I use them just on Sundays, unless things deteriorate then twice a week for a bit. Yes they DEFINITELY help the stress incontinence, which of course makes it all worse if you are sore and dry down below, and then of course you feel like a smelly old lady and very un-sexy!
Havent checked this thread for a while because it seemed to have stopped.
Good luck, let us know how you go on. Love Zoe xx (knowles is just sign-in name)
p.s Dont let the doctor give you the oestrogen cream, its horrible to use and makes a mess of undies. pjs etc. Probably cheaper to prescribe!
Hi all you are a great support lets keep in touch and share our problems we can get through this together
I'm relieved to have found this thread because I'm getting several of the side effects mentioned here and have been worrying about them but now I can see I'm most certainly not alone. I'm on Aromasin but it has the same action as Arimidex.
I've been on it for 16 months and the side effects are gradually getting worse. I've had the dreadful sweats and flushes all along but now am starting to get pains in my feet, legs and hands and now stress incontinence too caused by the effect on the bladder of the lack of oestrogen.
Knowles - you mentioned you're on vagifem. Can I ask what dosage you're on - do you use them every day?
Just thought i would share this with you, on holiday my hubby bought me some Nordic Walking Sticks! I know i look a right prat marching through my estate but it really helps with my mobility and though i use them to help me get about i puff out my chest and make it look like i am exercising!
hi jackie and aroma so glad you said the things you did thought it was only me been on arimidex for five weeks now after ten days I felt as stiff as a board lower back ache walk like a ninety year old joint pains in hips I keep hoping it will get better not much quality of life though best wishes suzan x
jackie,im 58 so i know its not age i only got theses symphtoms after a month on arimadex .as you say the pain can get you down ,i also have lymphodemia so lifting is a problem for me anyway .keep with it we can do it girl!! take care .lynn xx
Hi yes the pains drive me mad as well I also have sleepless nights I was up at 2.30am today I never have a full night and like you a wreck by day.I get very cold especially in my feet which is very odd for me as I used to get too hot it was always a joke to see me in summer clothes in winter.
Some days the pain is so bad I can hardly move then another day it is better my arms are the worst cant even lift a kettle at times this really gets me down and the thought of another 4 and a half years like this makes me wonder if I can do it.
I am 52 so I dont suffer with flushes,but my brain is not so alert is this the drug or my age !!!!!!
Still need to keep going suppose it is doing me good
Any one else totally fed up feeling like this??