Thank You Ladies for your thoughts and I will check into that with my PC.
Blessisngs to all of you.
Hi everyone I was hoping from some advice on tamoxifen, I was diagnosed with invasive lobular cancer in august had lumpectomy and 3 lymph nodes removed thankfully it hadn’t spread into nodes , started on tamoxifen in November , had daily radiotherapy for 4 weeks which just caused fatigue and a burnt boob , my last week of radiotherapy I developed deep muscle and bone pain all over my body which has steadily got worse my gp has prescribed various pain killers and now I’m taking morphine 60mg slow release tablets twice daily and oramorph four times daily , the pain relief is taking the edge off it but not taking it away I hate pumping my body with all these drugs ?I’m seeing my oncologist next Friday and they are doing a bone scan has anyone else suffered like this I can’t do anything like I used to before cancer , I would be up every day at 5am see my husband off to work then do the housework and prepare our evening meal before going to work on a 8-8 shift as a manager I often ended up bringing work home yet still had the energy to do normal things , now all I do is maybe wash up and that leaves me in agony!! I just want to be me again ? Sorry for the rant ladies any advice would be brilliant xx
I have been on tamoxifen from 2012 and was initially told 5years but at last years review with my oncologist he recommemded that I stay on it for another 5yrs. For the most part I have had the hot flushes, łów sex drive and joint pain (but not severe). However the
last 6months my pain Has taken over my life. Im on słów release tramadol and GP just says they think its side effects from the tamoxifen. Pain is worse in hands and feet but generally my legs and arms are sore. At the moment I’m managing to go to work and thats about it. Other daily tasks are too sore. Housework has to be done room at a time as my hands start to cramp up. Ive had to stop my Pilates because my feet were crampimg so badly throughout it that it was too painful to do and im unable to go out walking which I always loved to do. Im due to meet my oncologist next week and I am hoping for some answers. My GP has referred me to rheumotologist but has warned me that the waiting list is very long. I cant socialise as the pain becomes s too bad so I very rarely go out bar my work which Im struggling with nów too. Ive become very down recently because I feel that no one is giving me any answers. I dont Want to keep taking strong painkillers.
Hi Lisa,welcome to the forum.Sounds like the Tamoxifen has not been kind to you ,alot of ladies make the decision not to continue with the meds as they affect their quality of life so badly, but it’s a very hard decision .You need to discuss with your Onc what your percentage gains are from the Tamoxifen and weigh up the pros and cons.Let us know how you get on .Jill.
I feel everything you feel. I just keep praying. Have you gotten any better?
I’ve been on tamoxifen since 2013. Only recently has the joint and muscle pain been close to unbearable. I suffer from night sweats multiple times a night as well. My ankles are locked up in the morning and I practically fall out of bed. I have numbness and nerve tingling in my left foot. The muscles in my hands and feet are constantly cramping up. I was worried that I have RA or MS or something, but maybe it’s the tamoxifen? My onco seemed doubtful, said it was more likely menopause. I’ve had two low grade IDCs, one in each breast, one of which showed up while on tamoxifen in 2015. She wants me on the drug until 2020. I don’t think I’m gonna make it. I’m gaining weight from the lack of exercise. I used to love to go for long walks, but it’s difficult to do when my foot feels like it’s burning or has a tourniquet on it. Herbal remedies have been exhausted. NSAIDS only take the edge off. I’ll try drinking more water. Any other ideas?
Hi Ladies
I have been on Tamoxifen since 2012 - only problem up to that point was the hot flushes and weight gain. The team asked me to go on the extra 5 years trial to which I agreed.
However over the past 6 months I have been experiencing foot and lower leg pain. Symptoms are really stiff feet and ankles on awakening …I go downstairs like a 2 year old, two feet on each step and very slow - I remember the days when going up and down stairs was automatic but now each step need planning!! The other problem is that my knees suddenly give way without any warning …and they are painful too just not as bad as my feet. The pain seems to be centred on the tops of my feet like a strange cramp - anyone else???
I dont know if its all just ageing, the weight vain or the Tamo …something I intend to ask in my next consultation in July.
Wishing everyone well xx
Hi there
I’ve been on tamoxifen since Dec 2013 and I too have recently been experiencing achy joints especially my feet ankles and knees. Haven’t got an appointment with oncologist till September and fed up going back and forth to doctors . Let me know if you get any advise . 
I’ve tried Anastrazole (Arimidex) and I’ve tried Exemestane and although the hot flakes were annoying, the join pain was debilitating. Now my oncologist wants me to try Tamoxifen. After having 4 joint replacements, i refuse to suffer more joint pains! Been there, done that. I’ll try, but that’s all. It makes it impossible to exercise, and that’s important, too.
had my first oncologist appointment this morning. I know she wants me to take Tamoxifen so I raised the question of joint pain; she shrugged it off and said she’d never heard of it as a side effect. She quoted NICE guidelines and statistics.
I wonder when someone is going to take this seriously?
Lin
I make it a habit to read the teeny tiny print of the crimp that comes with the medication. Even if i don’t understand it all.
But, to give your oncologist her due, she might be shrugging it off so you don’t assume you’re going to get the SE just because it’s listed. It’s like the placebo effect in reverse; of you think something bad is gonna to happen, it’s more likely. Good luck!
Does anyone take naproxen with the stomach lining tablet for joint pain with Tamoxifen or are you all too scared of further health risks like me?
I was prescribed naproxen with the stomach pills too …got scared reading side effects so find paracetamol / ibuprofen my best friend as and when !!
Hi I’m wondering if anyonecan help me.
My mum would like to talk to her oncologist about changing her hormone tablet. Does she have to wait for her next scheduled appointment with her oncologist or is she able to ring up and request an appointment?
Thank you
Charli xx
She can ring up breast care unit and speak to one of the nurses and they will arrange an appointment to review her medication if it is causing her problems .You don’t have to wait and suffer.
She might want to discuss exactly how much benefit she is likely to be getting from the meds as for some people it is very low percentage gain(less than 1% for me ) , for others it’s more crucial .It is a difficult balancing act between quality of life and stopping the bugger coming back but if the side effects are really debilitating she could discuss taking a complete break from the meds for a while and see how this impacts on her health .There are a lot of ladies who do reluctantly decide not to continue as their lives were so badly affected by the medication .If you have information about her diagnosis you can get a rough idea by inputting this on “NHS Predict” re the benefits for an individual but it’s only an “educated guess” not a precise prediction of the future!!
Hi y’all from Dallas: Just wanted to throw out a couple of ideas. I was on anastrozole for 21 months and developed very severe joint pain that basically crippled me. My onc took me off it and sent me to the rheumatologist. First, the bottom line is that they do not know why hormone therapies cause joint pain. Period. That is why everyone is hearing so many wacky theories from it’s all in your head to it’s just normal for post menopause. There’s also a theory that the therapies bring on arthritis for those who have a genetic predisposition to it. I can tell you that my mom and grandmothers all had arthritis, and it was nothing like the disabling severe pain and swelling I experienced. In the 6 months i’ve been off it, the pain and inflammation have rapidly diminished, which is what happens for most patients. Does osteoarthritis do that? I don’t think so. Second, for those ladies who have lower leg muscle pain and cramps, this is one of the symptoms of hypothyroidism. Your blood levels of thyroid hormone may be ok, but both estrogen and tamoxifen bind to the same receptors as thyroid hormone, and can block sufficient uptake of TH. So all three oppose each other. I know this because thyroid disease runs in my family, and several people take both Synthroid and estrogen. They have to be carefully balanced or you get the symptoms of hypothyroidism. Foggy brain, exhaustion, lower leg pain, weight gain, etc. I suggest getting your oncologist to refer you to rheumatology to manage the pain and inflammation, and to endicrinology to check out the thyroid disorder symptoms.
Welcome to the forum Yankeewoman .Interesting information .Cripling joint pain is certainly not unusual with AIs ,Ive heard so many ladies talking about “feeling 100 years old” on these meds .Lets hope they find alternatives that don’t cause us so much misery soon !!
Thank you very much for your advice Jill, I shall get onto that. She has had her NHS Predict results and the hormone therapy isn’t crucial but I suppose if the side effects aren’t so bad then she will want to do all she can to keep the cancer away. Might just take some playing around to see if one type of tablet agrees with her more than another.
Thank you again
Charli xx
Hi,
I experience foot pain pretty constantly and have struggled to find shoes that would help me alleviate the pain. Well, i have to say that I have found them. They fit well. They have reduced my heel pain as well as my fasciitis symptoms. I can walk much easier and longer now . So happy I got these shoes! orthofeet do the job!