Hi everyone let me start with a little background info. I was diagnosed in Nov 08 surgury in Dec lump and 15 nodes [5 affected] six chemo [3fec 3tax] this finished April 27th. Started first of 20 rads on 24th June four left to go. just before starting rads started to get very sore and aching joints hips feet and hands mostly. This has gradually got worse and worse. From a very active person I am sometimes hardly able to walk for more than an hour or so and then i am absolutley shattered. Spoke to nurse at radiotherapy session who I am afraid was not a great deal of help… She suggested it may be due to tax but surely this would have continued after chemo and not two months later. I asked her that as I had menopause thrust upon me could this be a side effect of this [loss of bone density]. She looked vacant but did not seem worried and suggested I take ibuprofen. I will have to see my GP as pain is increasing. If it is arthritis or some other non life threatening illness then yipee but I am really very worried at present and hope maybe one of you knowledgable women out there may be able to help.
Hi kittyw. Are you taking hormone therapy of any kind? There seem to be loads of us on here with all sorts of problems with tamoxifen or AIs, so if you are taking anything, it could be that. I have found that tamoxifen gives me fatigue like I’ve never experienced before. I’m active too, and it’s a bummer.
Hi Salopets thanks for reply No not taking any hormone treatment Wish I had some drug to blame this on then I may not be as paranoid.
kitty x
Hi Kitty,
I don’t have much to add but noticed in your post you said
“I will have to see my GP as pain is increasing.”
As you are still being treated for breast cancer may I suggest that your first call here should be on your oncologist. If you speak to your breast care nurse or oncologist’s secretary and ask for an appointment. What you describe is very often down to tax but I would have thought unusual to start after finishing chemo.
Hope you find an answer soon - pain is very draining.
Dawn
xx
Hi kitty I am triple negative too.I found that I had awful pains on tax which then got better but ever since I get pains in back,shoulders and occasionally joints.It is over 2 years since I finished tax but because I havent got back to normal fitness[not helped by breaking my leg in early Feb]my muscles etc react very badly to anything even slightly out of the ordinary.I have mentioned this to my onc who feels that until I can maintain a regular exercise routine I may have problems but there is nothing sinister going on.I see him again on Tuesday and,as my back went while I was doing washing,will mention it again.I think recovery can be slow and in your case maybe the delay was because you began to do a little more.I too wish there was a pill or drug to help keep things at bay.
Valxx
Hi Dawn thanks for reply however nurse I spoke to was my oncologist review nurse. I will ask her that I speak to onc on wednesday when I am next reviewed.
Val sorry to hear of your troubles hope back gets better soon. For all the pains are similar to those I had while on tax it just seems odd they turn up now.Thank you for reply
kitty x
I don’t think it’s unusual to get bad joint pains after chemo is finished. I have a friend who is 18months on after treatment finished and she has dreadful problems with her knees, hips, feet etc etc & has to see a rheumatologist every 3 months for injections to try and help with the pain as well as taking pain relief drugs.
Hi
I had problems with tamoxifen when i took it but it settled after 3 months. I was told that it takes about that time to get into your system and your body to settle down. Mine was problems with vision, tiredness. Give it a lttle while longer and see if it settles or just ask to see your ocologist. You could ask to change but there appears to be side effects with all these drugs. You could be lucky and change to one that your body can deal with better. Good luck and i hope you get this sorted out quickly. There is nothing worse than not been able to walk/move without pain. (I had the problems you had on arrimdex- now on arromasin.)Let us all know how you get on.
Hello Redders and thankyou I hope what your friend had maybe applies to me Iwill see onc on wednesday hopefully and try to get a referal. Again thanks for reply Lupin but I am not on any medication so cant blame that or change it for a more suitable one. Need to change to a more suitable body really this one is kn#ck#erd
kitty x
Hi Kitty
Opps that will teach me to read more cearefully. Last of estegen can cause aching joints etc. I was crashed into it as i had my ovaries zapped. I was in a bda way for a while and beacuse of that i now have aches and pains of an older woman but i am affraid that is just a small prices to pay to still be hear. I take Glucosamine 2000mg a day which has helped ( this does not happen over night.) I tried various cominations like cod liver oil and glucosamine but have found, for me this is what helps me. As for needing a new body…i would trade mine in given the chance to the pre cancer/breast removal, chemo, rad treated body i have now. I have just learnt to live with the side effects. It is worth asking more questions though and if you donot get any answer or ones that help ask to see someone else. Don’t forget to let us know how it goes.
Hi Kitty
Like you I am a very active person and could not wait to get finished treatment so I could resume all my activities and get back to fitness. I did not have a bad time on tax but did find it caught up with me later and by the time I finished rads in early May I felt like I’d hit a brick wall. I still get stiffness, sore joints, and recently had to get co-codamol from GP for very sore stiff neck which was checked out with onc and nothing sinister. I think our bodies have been through so much and it takes some time to get it all out of our system.
On the plus side I am back to swimming, walking etc and every week I feel fitter and healthier. I do hope that you feel better soon and I would advise trying your GP who might be a better ear, I know mine was.
Anne xx
Kittyw,
Just to say that I finished chemo end of May and not yet started Tamoxifen - but experiencing really sore and stiff joints, especially the knees, ankles, wrists and finger joints.
Going to ask about this at onc appointment too - as difficult to live with.
Bright x
Hi girls and thankyou all for your replies while I am sorry a lot of you have had to suffer these awful aches it is good to hear i am not alone. I will speak to onc on wednesday and if i get no joy my GP is quite sympathetic.I will let you know. take care kitty x
Hi Kittyw,
I had really bad joints - hips, knees, ankles and feet - after finishing chemo. I did ask my onc, he said it may be related to the menopause, as I was artificially pushed into it while going through chemo. A year after finishing chemo, I did start periods again, and yes, the pains had eased considerably by then, also my other menopause symptoms.
I hope your onc can help, and the pain eases.
Shannon
Hi everyone sorry i have not replied sooner . Went to review on Wed to find onc on holiday for two weeks so got no joy.Can’t make up my mind to see gp or wait for onc to return.Took off for Amsterdam for the weekend with hubby had a great time but a lot slower than in the past.When i am walking its fine but when i stop even for about ten minutes i seem to seize up, so setting off again is very slow and awkward.As i walked into the cafe or bar normally but hobble and shuffle out i do get the funniest looks. Was very tempted to visit the “coffee shops” thought the medicinal cake might help but resisted. kitty x
Hi,
Just to add that I was diagnosed in July 2007 as triple negative and had FEC, Taxotere, Mastectomy, rads and now reconstruction. I am 53 and post menopausal. I have had joint pains for about the last year, despite trying to keep going with the gym, swimming and walking. Sometimes its intolerable and quite unexpected, nobody prepared me for this and it took a while for me to realise that it was a side effect of the chemo, I can’t believe its the menopause. I finished my chemo 18 months ago, so its annoying to still have reminders of it. Kittyw - the way you describe seizing up is exactly the same as I am, I find it really embarrassing!
I have had a lot of trouble sleeping because of my hip pain and my GP has now prescribed a long acting pain killer similair to ibuprofen. I have taken it for the last three nights and it makes a huge difference. It might be worth a try?
Lois
Thanks Lois. think the gp may be the way forward .