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!
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.
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.
I’ve just come on here as could cry with frustration. Finished radiotherapy two weeks ago and foolishly thought I’d got my life back. Can hardly walk sometimes due to pain hi hips and legs. Worse at night like throbbing pain in thigh and hip. Added to night sweats and insomnia I’m exhausted. Thank you for sharing as now I know I’m not going crazy
I finished rads in July after mx and chemo since September 14. I am still very tired, achy and have trouble sleeping.
Im on Tamoxifen have had terrible hot flushes (dropping in sweat like I’ve just run a marathon!) Since February.
I started on antidepressants in March which reduced the sweats. Recently started in tamazepan for sleep, but still didn’t work so gp has added amitriptyline to make me sleep - this has worked and I sleep most of the night, plus a bonus that my regular flushes have significantly reduced. Although I feel like my internal thermostat is permanently set on high!
Still have the aching joints, feel like I’m 80 rather than 47, but managing to do yoga and acquarobics which seems to help.
I also still have to pace myself and have am afternoon nap to cope with evening rush with kids.
I’ve been having acupuncture for sweats and have had brilliant results…I’ve gone from 10 or so a night to about one mild warming. They are doing it as I was offered it for hip pain so asked if they would add it on referral.
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.
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!!
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.
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
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?
Unfortunately I can relate to all these posts. Finished rads in July after mx and chemo. I am just exhausted, I manage to get know kids up and off to school, sort our menagerie of pets and do a morning exercise class, then Im done for the day. Lunch and an afternoon nap before school run and evening duties. I’m on Tamoxifen since June, plus a cocktail of drugs for pain and insomnia.
I try not to take anti inflammatory drugs because I suffer with IBS and they make it worse. I have found ibuprofen gel is quite good - using it more like a body lotion as so many bits of me hurt!
Plus side is the anti depressants have reduced hot flushes to a few warmings a day instead of dripping in sweat several times an hour.
I feel like I’ve aged 30 years (more like my mum than me!) I was made redundant during chemo and cannot imagine working regular hours again. Some people seem to bounce back, others like use suffer long term se’s.
Hi, I finished my treatment march last year, I also get very tired, out of breath easily and I get underarm pain and pins and needles in my hands from the treatment, I went to see my plastic surgeon a few weeks ago, she told me it takes years to get over the tiredness, I don’t think I will ever feel like I was before cancer 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
Feel free to moan here Pam!!!Sweat sweat sweat is all I do at night too!!!I have acupuncture 2 weeks ago and it helped with the symptoms for about 10 days,been for another session today,have also ordered a "Ladycare " magnet which some people find helps with the hot flushes .A lot of ladies I talk to swear by venelafaxine or citrolpram antidepressants for hot flushes.If I can’t get on top of it any other way I will try one of them.
Hi Pam,yes anti depressants would be last on the list for me too,but let’s see how it goes.I have spoken to ladies on the Forum who have found Ladycare magnet works for them,mentioned it to surgeon ,he laughed but said if it helps who am I to question why!!!
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 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… )
Gail have you talked to Oncologist about trying Tamoxifen instead ?A couple of ladies I talk to have switched and found it much better when it comes to joint pain.Dont know if this is possible for you ?Hope you get some relief and some sleep soon.Jill.
