I am on year two of arimidex and I hate it. I am in pain all night, even bought a fancy lazy boy chair to sleep in, but I struggle to get out of it when I stiffen up from the drug. I get all flushed and hot, and can't bear a blanket. But in the morning I am in such pain, my fingers are stiff and can barely carry my cell phone. I have three more years, and I am struggling. I have tried many things, various pills and pain relievers. My kidneys are not at their best after chemo, so am nervous about ibuprofen, etc. Is there hope? (photo before hair loss with chemo... )
I am nearly 5 years post surgery for Grade 3 cancer and have been on Arimidex (anastrozole) for the entire time. I have had really bad night sweats and hot flushes all of the time and have tried various prescribed and natural options but nothing has worked. However in January I had problems with severe neuralgia in one side of my head and face and the doctor prescribed 300mg Gabapentin tablets for the nerve pain. The tablets make me sleepy so I can only take them in the evening and before bed, but they have helped the pain. However a side effect has been a dramatic improvement in the night sweats and flushes as I now sleep through the night - no more waking up with wet pillowslips and sheets (in fact no more waking during the night which I had been doing as I also have fibromyalgia). There is another (old) thread on the Breast Cancer Care Community page which has a number of posts from other women who have tried Gabapentin and I am not alone in finding benefit from this drug. It is great to be able to go out for meals or to functions and know that I am not going to be the one who looks as though they have just stepped out of a sauna!
You are definitely not on you own, l finished r/t last July and was also on a phased back to work for 3 weeks, although l did go to work in between treatments when on chemo. Then l went on annual leave for 2 weeks and made the mistake of returning to work full time, l found this exhausting and l have now reduced my hours, so l take every other Friday off and it helps with the tiredness and it gives me something to look forward to.
I am 65 had an MX last May and have been on Letrozole since July 2015. Usual side effects - aching joints, hot flushes, weight gain. For the hot flushes my Doctor prescribed Clonidine which has really helped, still get the flushes but no where near as bad - tolerable. For the aching joints - glucosamine with chondroitin which I have taken for years, cod liver oil tablet daily and rosehip syrup - all help. Weekly I visit a man who specialises in CHinese medicine and manipulation - had been going to him for years before the breast cancer as have always had bad back and aching joints - he knows his one purpose in life is to keep me ont he golf course - which he does - but he has really helped with the area around the scar which is always tight.
I am now trying a magnet bracelet to see if that helps the hot flushes.
Take care xx
Thanks Jill xx
Thanks Jill, I have my first acupuncture assessment on the 7th March, so all I can do is try it, some of my friends have the ladycare magnet but they are using it for the normal change of life, I had not thought of trying it - but could be a good move will look into it. Not really sure I want to start on antidepressants but who knows, it may be a last resort. I get so exhausted too, thought I had got over it but its come back after a really bad cold - I think I will ring my breast cancer nurse and have a chat. Thanks for replying Pam x
Although all the symptoms are not good, it is good to know that I am not alone, I finished rads Nov 2014 but gosh I get tired, had a bad cold early January and its really knocked me, I ached, I am knackered, my breast tissue has really become sore again, sweat sweat sweat is all I do during the night. I have been referred for acupuncture so awaiting my appointment. I think I need a sick note, I feel bad at work though, I feel that folk just think I am better, I am not a moaner, but this week I feel like moaning. Pam x
You are not the only one. I started Letrozole the first of May and at first the joint pain was minimal in the knees and hips. This has worsened over the autumn, despite participating in golf, gym, swimming, walking, etc. I don't have time to fit in any more exercise. Now I am getting "repetitive strain" problems in various joints and since October have been suffering from tennis elbow, inflamed biceps tendon and now inflammation and tenderness in the left outside wrist and thumb. I am at the physio's weekly with my "injured parts". I continue on with the exercise but need ibuprofen at this stage.
I read about taking a high weekly does of Vit D2 of 50,000-unitsfor the joint pain. Is anyone doing this?
Are the doctors interested?
I finished rads in December and am experiencing tiredness, hot flushes etc. I haven't started taking my Letrozole yet : l Was wondering if anyone else has awful 'bouts' of nausea and dizziness that can last anything from 10 minutes to several hours. Also lack of appetite? best wishes to all Karen x
Hi Everyone, I finished Rads October (no chemo) I feel that I was lucky with side effects,can anyone tell me if the pain I feel in the heel bone of my foot is anything to do with s/e from rads? it is very stiff/painful until I get moving in the morning, only had it for few weeks. Is tiredness still a s/e of rads from October? does it get better? I am asking because I thought the tiredness might be to do with my heart condition or the rads?? I wake up and feel like I havent slept and can go back to sleep by 11am. or my energy goes all at once.
Hallo Ladies, I finished my rads in August and haven't accessed the forum much since then but during the Christmas holidays, exhaustion and the pain in my joints - especially my feet/ankles, hands and knees was so bad that I began to feel despair. "What use recovering from BC?" I thought, if the result is that you are crippled with rhumatoid arthritic symptons and can't do anything? I'm relieved (but sorry) to see that so many of us are suffering in this way.
My aches and pains are permanently present and I think getting worse (or maybe my tolerance is reducing) to the point where I can no longer practice the yoga that I have done for 5 years - my joints are simply too sore to take the pressure of a lot of the poses. I do sleep but I usually wake up feeling about 80 years old and it takes a while to walk properly. Is this normal? I did see the GP before Christmas and she persuaded me to carry on until I had been taking the letrozole for at least six months. She did say that there are alternative tablets but on reading all the posts here it seems that they produce similar side effects. My BC consultant has said that I will be switched to tamoxifen after 2 years. Has anyone else switched and seen an improvement? Incidently, When I went to the GP I found that I had very low levels of vitamin D. I've been taking 3000 M Us for a month now and I must say that the tiredness has reduced.
Hello, ladies. I am now almost five years post treatment [lumpectomy, full node clearance, chemo, rads] and so I rarely come on the forum nowadays.
I have been on Letrozole for the five years since diagnosis, and I am afraid the dreadful joint aches and pains are still as bad as they were in the early days of taking it. However, on a positive note, the sheer exhaustion brought on by this drug, has got better over the past eighteen months, and I no longer need an afternoon nap, but as you can see, the fatigue went on for a long time- around three years!!
I was on Naproxen to help with the pain, for quite a long time, but it only took the edge of the pain, and caused me other side effects to the extent that I now go without any pain killers, apart from some paracetamol on really bad days.
NICE guidelines now say BC survivors need to remain on Letrozole for ten years, as it is so effective at reducing the chance of recurrence, so I grit my teeth and put up with it!!
For all you poor aching joints and bone pain ladies, there's good news. i read earlier this year while undergoing radiation treatment that the more severe it is, the less likely you are to have a recurrence of breast cancer in the same breast - so if you can just survive it... according to a UK study. So far I haven't had any joint pain (been on anastrazole since Feb) but I am having trouble sleeping on my tummy because the second rib from the top is really sore (I had a lumpectomy followed by radiation) - also the area where the surgery was. Can anyone suggest some sort of "thing" I can buy that I can rest my upper half on to place on top of an extra frim mattress for when I visit my mum? My surgeon says this pain (rib) is likely due to the radiation and won't ever go away - lovely!
Any suggestions or ideas would be most welcome.
By the way, since being on anastrozole I'm tired all the time. I'm 61 and when I went through menopause I had about 4 months of a few barely warm flashes one winter and that was it. Obviously God knew what would be in store for me 10 years later and spared me, as menopause is back again, though once again it's still just tepid - so far. Hang in there friends.
Thanks for all the comments, it does help to know that I'm not the only one! I think frustration is my biggest problem - I am always the happy, calming influence at work and having to act at being that every day instead of it happening naturally is wearing me out!
I've bought one of those 'chillows' - nice and cool at first but I think I manage to make it overheat - but once my head and neck are comfortable, I find myself having to stick my feet out of bed and then wake up with a twisted back... never mind, it'll get better one day.
Hallelujah! How amazing - never dreamt that you were you, if you know what I mean...
Lots of love X
I am on Letrozole - but only since July and have the same aching joints problem, all the joints that were bad before are now worse. Hate having to keep asking the other half to open jars etc. Sometimes have to take a painfkiller in the night and what with the hot flushes which are horrible do not sleep well. I had a MX in May and wanted a double am now wondering if I had had the double would I need to take Letrozole so am going to find out - seems to me that 6 months of discomfort will be better than 5 years and at least I would be symmetrical.
I won't give in to the side effects and I am able to do all the things I love to do, like gardening and play golf but have to pace myself and if I get too tired have to rest, always listen to your body.
Fortunate still here to be able to moan - keep strong
I am on tamoxafin for almost a year now, finished rads in January and have been back to full time work since April.
I get an aching knee a lot, nothing too bad, but annoying. Sometimes when I stand from sitting and take a step my knee will give and I have fallen once or twice when it started happening at first. Like others have said, it comes and goes. The night sweats usually come every 2 hours and as I am usually tired at night I can usually fall back to sleep. An odd time I have been exhausted but not often, really. I also get episodes of superficial vein thrombophlebitis in my arm which is quite painful and lasts for about 2 months.
I have had 3 surgeries last year, including removal of lymph nodes and the area under my arm and where the cancer was is sore all the time. Not very sore but annoying. There are a few other minor things, my digestive system hasn't recovered 100% yet but I do have lovely curley hair. I now believe this is the new normal. Maybe sometime in the future all the discomfort will be gone but I dont see that happening for a long time yet.
Lovely to be able to come here for a moan.
I am on Letrozole - almost a year now - my joints are terrible sometimes with that carpal finger syndrome (a known side effect) sometimes it is fine, sometimes things land on the floor and smash because fingers just arn't workiing. Knees hurt, hips hurt etc but none of this is permanent at the moment and i try not to hit the pain killers. Definitel not the docs.
Did have a couple of low points recently thinking that if this is what I am like after 10 months I'll be in a wheelchair after 5 years. But then the moment passes
I have days when I am exhausted, never know why, though more frequently now I am quite lively
When I have a bad day I just go with it, but I do not work so am fortunate there.
Wish you well
Thank you so much for your post - it is so reassuring to know that it can happen completely randomly. As soon as I think I've turned a corner, my body's in built sav nav seems to shout 'recalcuate!'
I think it is the expectation that one day I will be 'back to normal' versus the possibility that I may never be that way again is not helping me combat the fatigue but at least knowing that I am not alone does help!
Many thanks, Mim x
PS are you 'Sestius' from Winwick - I am 'Mim53' now from Somerset?
Hi Mim, I'm well into my second year of tamoxifen, and I get all sorts of side effects in a fairly random way. A week or two of feeling ok, then up to a week of anything from exhaustion, anxiety, night sweats, hot flashes, leg cramps. Everything so far has been manageable if at times grim.
I am avoiding going to my GP as I want to try and do without more intervention. I don't know whether that is stupid or not, but it is how I want to manage things at the moment. To be honest, my best support is this forum. Every time I get worried, I type in my symptoms and sure enough, some other poor soul is going through just the same thing, and so at least I know that I'm not going through anything unusual for people like us! I just want to be normal again.....!
But we do always have the option of our doctor, and if it going to make you feel better to talk through all this to someone medical, then do it.
And if anyone tells you to suck it up, or keep smiling, you have the option of imagining a large pile of manure falling on them.
take care x
Hi, I finished rads about 15 months ago and have had aching joints night sweats ever since. Most of the advice I have been given or read about suggest that these kind of symptoms are to be expected from the hormone treatment (I take Letrozole) however, typically only for a few months to a year after starting.
I know there is an option to visit the GP and seee if another hormone treatment would be better for me but I am on andtidepressants and beta blockers as well and apart from the above, they work well together. I don't feel these symptoms are stopping me from doing anything, but just want to know if anyone out there has had this kind of thing dragging on longer than they had hoped?
The exhaustion is causing a problem though - when it was really bad, after rads had finished June 2014, I was on a phased return to work and was free to go home when I felt that I couldn't function. I have been back full time since January and since then have coped well. However the last 5/6 weeks seems to have brought a recurrence of the fatigue and that is bringing me down - I think I have a chicken and egg thing going on - the joint pain and flushes are making me tired and then I get frustrated and tense so the pain gets worse!
Sorry to have gone on a bit - I think I will feel happier if I know that someone else has felt this way as well! 🙂