Topic: painful joints
painful joints
posted Mon, 21 Mar 2005 06:28PM
Patsy
I was a young 62 who is now going on 102 since breast cancer. Very sharp and specific pains in backs of ankles Knees, shoulders and "heels of hands. Getting out of bed in the morning is the worst especially sitting in the bathroom (as you do!). It gets a bit better during the day but I did not have all this before BC. Anyone got any answers, comments, explanations, prognosis in addition to glucosamine chondroitin which I am taking at the moment. Anyone else in a lot of pain overall? It is debilitating and very ageing. Is there help anywhere? Is there a dietary answer and do we have access to appropriate dietician? Had my annual check up recently, they did blood tests, xray and I have to go for an ultrasound. All comments gratefully received!
(No Subject)
posted Thu, 24 Mar 2005 02:03PM
Jenny P
Oh yes! This sounds so familiar. I have got a lot worse since taking Arimidex. Most of the pains and stiffness disappear with moving around or go by themselves after a few days to reappear somewhere else. How do you know if it is just side effects or something more? I have a particular pain in the hip which has not gone away and at my appointment in a fortnight hopefully they will look into it. So far I have had no tests at all, for anything, not a scan or blood test since the end of the chemo and that was fifteen months ago and I feel a bit neglected. It would be nice to have tests to prove a positive "yes everything is fine" instead of "if you feel OK then if probably is" attitude
Me too
posted Thu, 24 Mar 2005 05:52PM
dorothyiris2000
Hi, I am currently on Tamoxifen (2 years) and suffering from aches and pains in hips, knees, and wrists. Also alot of stiffness esp. in morning, relieved by exercise (yoga is good), but worse later in day when tired. I seem to tire very easily. Problem started when I was on chemo (taxotere) 3 years ago. I improved after finishing chemo when I started taking gloucosamine, it took about 6 months, but about 6 months ago strated to get worse again. Gp sent me for various tests and scan but found nothing. I've been told "its general wear and tear" and "its your age/ menopause". However GP has referred me to an Rhematologist and I'm waiting ..... 17 week waiting list.
I have found that if I ask my GP, he is quite good at agreeing to refer me, he is wonderful! More than I can say for the Onc at the hosiptal who just trots out the standard phases, I often feel he is not listening to me.
Best wishes to both you, Dorothy
Yes and Me!
posted Thu, 24 Mar 2005 09:46PM
sandie1
I posted on different links here re Arimidex & Glucosamine. I am 12 months post chemo nearly 11 post radio & 11 months on Arimidex. The pains started in my wrists about 6 months ago, still had pains in legs from chemo which did get better for a few weeks about a month ago, now my legs are worse than ever.Its obviously the Arimidex - I work for GP's and my main boss says to come off Arimidex as I am losing quality of life, which is true, but I would blame myself if I came off then got mets. I have started taking Glucosamine/Chondroitine/MSM liquid combination at cost of £25 per month but told this can take 6 months to kick in, can I wait that long?! I am now also suffering cold sores on my back, and the hot sweats will not go - think I am in a worse state than while on chemo. Please does anyone have any ideas for me, Patsy, Jenny, Dorothy & all the rest?
Me as well
posted Fri, 25 Mar 2005 01:00PM
carole9
Have only been on Arimidex since January and didn't have chemo. All seemed fine and I thought I was going to miss the side effects but oh no, they a kicking in big time, especially the hot flushes and aches and pains, it makes me feel so old.
I was recommended black cohosh but there have been no really prolonged tests on it especially in relation to women who have had breast cancer so am not taking it at present. If anyone knows anything more about it and the effects I would be very interested in hearing about them.
I suppose we will just have to carry on with the struggle and just count our lucky stars that things aren't worse!!
Take care all
Caroe
Painful hip
posted Sat, 26 Mar 2005 07:10AM
lizzie38
Jenny - I will be intrigued to find out what your doctor is going to do about yourhip as I have been suffering with lft hip for more than 9 months now. Was discharged by Onc right after radiotherapy and annual appt with surgeon has just been cancelled until later date - no reason given in letter.
I have been seeing my GP - he did blood tests and said the alkaline phosphatase test would show if I had mets - then sent me off to a cottage hospital for an ordinary x-ray of the hip - normal. Again he said this would show if it was bone mets - this I don't understand, since a bone scan is usually ordered. He has now got me visiting a physio once a week. She said she thinks it is a nerve problem in my spine and she can only rotate my hip 50% compared to right hip.
I think it could be side effect of Arimidex but when I asked my GP if I should stop taking it he firmly said no, let's see what the physio can do. When I finally get to see the breast surgeon I am going to ask him to refer me back to the Oncologist as I don't think my gp knows what he is doing.
Liz.
Joint pains
posted Sat, 26 Mar 2005 12:15PM
kitkat
After a year on arimidex my joint symptoms are getting worse. At the moment my achilles tendons are really painful particularly after sitting and on getting up during the night. I am just starting to run again and uphill is agony. Discussed a little arimidex holiday with my husband whilst running this morning. Probably not one of my best ideas but very tempting.
Cath
Those aches and pains!
posted Thu, 31 Mar 2005 06:51PM
dorothyiris2000
Hi, I'm begining to think the quack must be part right. Aches and pain come with age and wear and tear. But we're not all 80 are we? At what age should we suffer, well it can be different for everyone, I guess. I know a lady of 82 who is quite active, and another lady who at 70 can hardly move about, but noone knows why the difference. Some of us might have had harder lives. However I think we may be predisposed to certain conditions i.e. arthritis, and in our cases, cancer treatments may cause these to come on early or be worse than if we had not had BC. So, it doesn't seem to matter if we're on Tamoxifen or Arimadex, or if we all had different chemo, the treatments we've been put through are so harsh that it causes this early "ageing".
Do you think I might be right?, it would explain why so many of us go on to have simular problems even though we may be taking different drugs.
Sandie, Surely you shouldn't be paying so much for your gloucosamine etc. I take 3 x 500gloucosamine with 400 chond. in tablet form and it costs me about £5 a month over the counter at my local chemist. I don't take MSM. It does take 6 months to get going but it did work for me. Although my pains have been worse over the winter, I don't want to stop taking these as I believe the pain would be much worse without it. You must still be seeing your oncologist, make sure your telling him all your symptoms, and keep telling him til you get some notice taken. I do sometimes feel I'm nagging them.
Hope things improve for you, best wishes Dorothy
Dorothy
posted Thu, 31 Mar 2005 09:23PM
sandie1
I agree that I may be paying too much as the liquid contains 500mg Glucosamine & 150mg Chondroitine plus Zinc, Eve Primrose Oil & other things, so not seemingly as good an ingredient as you are taking. I did see something else in Boots the other day, so have decided to investigate in depth but also finish what I have started in the meantime! Only been taking a week so need to give it a chance. I see the doctors at the hospital at the end of May but don't have much faith, from past experience, in what they recommend. I have though of asking for an earlier appointment to actually see the oncolgist consultant even if I go private - may do this. I had no arthritic symptoms at all until last November - 7 months after starting Arimidex. I had painful legs while having chemo but this is very different, that was more a circulation pain. I have always been fit with loads of energy - now I am a totally different person, 60 going on 90!
Here's hoping one of us finds some magic cure!
Love to all
Sandie
painful joints
posted Thu, 31 Mar 2005 10:29PM
lizzie38
Hi y'all - so pleased to think I am not alone with my hip problem - and my right hand!! I have been to see a phsyio for the last 3 weeks, prescribed by my gp - she can only rotate my left hip 50% compared to my right one. I can't even extend my left leg without severe pain and cording. I think it is a total waste of my and her time. I am so sore after phsyio treatment. I had alkaline phosphotase blood tests and normal x-ray on my left hip - all normal, so my GP says no bone mets. I have just had my annual check up with my bc surgeon cancelled, hospital said will be in touch with me "soon" and feel utterly abandoed by the NHS - I was "discharged" by the Oncologist a month after chemo and radiotherapy and I just feel I am floundering around with no action.
Could anyone explain to me why bone scans are different to ordinary x-rays of the hip? My physio said the alk phos tests would show bone mets but I don't know enough to believe what she says.
I guess it just might be Arimidex - been on it a year now, and it is only since I took this drug that I have had hip pain. I asked my GP (in the absence of any kind of help from Derriford Hospital) if I should discontinue Arimidex and he said an emphatic no. I think I am going to heal myself and take matters into my own hands and stop Arimidex. There is a quality of life I wish to have, no matter the survival stats.
I would love to hear from others with the same kind of problem.
Liz;
painful joints
posted Fri, 01 Apr 2005 09:11PM
sandie1
Liz, please don't give up Arimidex yet - You have been taking it about the same length of time as me and I am now taking Glucosamine + (as you can see on my postings above.) Today my pains are less severe, which is very encouraging, but probably will be worse again tomorrow! However, its is something I have to give time.(Only just over a week so far) You could try this or get similar from the NHS on prescription- so please give it a try - go & see your GP again & insist.
Love Sandie
Black cohosh etc
posted Sat, 02 Apr 2005 12:01AM
Patrisia
I started off on the wrong foot, in that I already had an arthritic cervical spine pre-bc but was coping, at a not oldie 63. I have been on Arimidex for 15 months now and feel 93! The pain is not only in my spine but in my shoulders, elbows, lower back and knees, have psoriaris & eczema, and the hot sweats......!
Just today someone suggested black cohosh, so I have been googling to find something about it. The first three reports scared the daylights out of me. 'Inconclusive'.....'may adversely affect breast tissue'....
'proliferation of breast cancer cell spread in mice trials'
So for the moment, it's 'thanks but no thanks' for me.
I will keep on with the Diclofenac and Evening Primrose/Starflower oil, fish oils and Glucosamine, and the Arimidex for now, and hope that everything will gradually improve - before I get to 93!
painful joints
posted Sun, 03 Apr 2005 03:13AM
jewel
last time I saw my onc ( well registrar) I mentioned painful knees and ankles and I said I think it is tamoxifen or chemo - he disagreed! asked me if I had done lots of sports when I was younger!
I was 45 when dx and felt 35 and am now 47 and feel 97!
I think I will print this page and show it to onc next time - there are too many of us for it not to be due to treatment. A friend who had bc 15 yrs ago and is still clear recommended glucosamine and chondroitin - it is expensive so for now I have got some glucosamine I've only been taking it a couple of weeks so I'll see how it goes. I'm thinking of going to my GP and asking if he can prescribe anything to help.
Oh and please dont take black cohosh - I've copied and pasted an article below.....
Last Update: Monday, July 14, 2003. 12:14pm (AEST)
Menopause herb linked to cancer's spread.
Popular menopause herb a cancer risk: study
Black cohosh, a herb popular for relieving the hot flushes and some other unpleasant symptoms of menopause, may make cancer more likely to spread, US and Canadian researchers say.
The news is yet another blow to women looking for something to safely ease the symptoms of menopause, which range from hot flushes to a higher risk of heart disease and cancer.
Some hormone replacement therapy (HRT) treatments have been found to worsen the risk of heart disease, stroke, some cancers and Alzheimer's.
Some herbal supplements, such as red clover, have been found to do no good.
Many women had been taking black cohosh because it seemed to ease the hot flushes and, because it was herbal, many presumed it was safe.
Not so, researcher Vicki Davis of the Mylan School of Pharmacy at Duquesne University in Pittsburgh told a meeting of the American Association for Cancer Research.
She said a woman who did not know she had cancer could be endangered by taking the supplement.
"This stresses that we really need more research into herbal therapies and natural therapies," she said.
Davis and colleagues in her lab and in Canada fed black cohosh to female mice bred so that they are prone to breast cancer.
They gave them the daily equivalent of 40mg of the supplement, the amount normally recommended for menopausal symptoms.
The mice were not any more likely to develop breast cancer in the first place.
But those that did develop it were more likely to see a deadly spread of the cancer, Davis said.
Her team found that 27 per cent of mice that ate black cohosh had the cancer spread to the lung, compared to 11 per cent of the mice that did not eat the herb.
The findings do not prove that a woman with undiagnosed breast cancer could be endangered by using black cohosh but Davis said it would be risky to take it.
Women who have breast cancer - or any other form of cancer - may need to be especially wary, she said.
It is not clear how black cohosh may make cancer more likely to spread, Davis said.
"One thing we don't know is whether it might accelerate a tumour that might be likely to metastasize or increase the numbers of tumours that would metastasize. But neither one is good," she said.
Love Julie xxxx
Good old fish oils
posted Sun, 03 Apr 2005 03:50PM
Joanna153
Going through my second bout of bc three years after the first dx (have now had both breasts removed) and now radiation, zolodex injections and stiffer than a fence post as a result. I'm 48 now and have found that a double helping of high strength cod liver oil pills - standard 7 seas type - have really helped. I'm also taking glucosomine, but only for a week or so, and will keep up with the other for now. When I was in hospital I left off the fish oils for a couple of weeks and really felt the difference, started again as soon as I could. It's probably better to eat the fish rather than take the pills, but I'm not a great fish fan!
Estrogen and lack of
posted Sun, 03 Apr 2005 09:49PM
DarkLady
I was told that estrogen helps muscles, tendons, and connective tissue relax, and maintain elasticity. When the estrogen goes, everything stiffens up, and on come the aches and pains.
It seems to be pretty indisputable that this is one of the late effects of treatment. The question is - if we/you knew it was, would you decline the treatment?
zipvit
posted Mon, 04 Apr 2005 05:25PM
dorothyiris2000
Hi, Sandie and anyone else who might be paying too much for supplements. Try a mail order company called Zipvit who claim to be cheapest available, they have a wide range of vits and minerals. They do Gloucosamine, with chrondroitine, also MSM, and evening primrose oil etc. They often have special offers and do cut price for bulk orders. I usually get 6 months at a time. I'm sure you could find their web site.
I was warned off Black Cohosh when I first started Tamoxifen by the Breast cancer nurse, also such things as Sage, as it was not known if they might interfere with the way Tamoxifen works. But not because an increase risk, so this must be new thinking.
Best wishes Dorothy
paonful joints!
posted Mon, 04 Apr 2005 09:20PM
sandie1
Dorothy - I will try & find Zipvit. My husband really does suffer from Arthritis, has done for the past 20 years. He is now taking Glucosamine, Chondroitine & MSM in capsules & is now suffering stomach problems, pain & nausea. He may go onto the liquid as supposed to be kinder to the digestive system & this is not available under the NHS, so we will pursue our investigation as to the cheapest liquid around. I have been taking large doses of Sage as recommended by hospital doctor in January for my hot flushes, now bothered by this - we can't win can we????
Julie, what a good idea to print this page off & take to the doctor's - I may just do that!
Love to all
Sandie
Difficult decision
posted Mon, 04 Apr 2005 09:23PM
mukau
Liz,
I am 43 and started taking tamoxifen October 2004 after 3xFEC chemo 5 weeks of radio and another 3XFEC. I took tamoxifen for 5 months. During that time my quality of life was miserable. I spoke with my onc and have taken a 3 month break. I am not suggesting you should go against the advice from your onc/Dr just want to relay to you my experience. I felt dreadful too, I had a back problem that seemed to be exacebated to the point where I was taking voltoral and paracetamol 3 times a day and it didn't touch the pain. The pain that others describe, muscles and bone pain seemed to be constant, the hot flushes I could cope with but not the pain. I got into the gym to challenge it naturally and started swimming regularly but felt so depressed which meant I was looking at anti depressants on top of all the other things. My sleep pattern was dreadful, constantly tired and feeling low and wondering where does this all stop. There came a point where I decided that whatever quantity of life tamoxifen may give me, I wanted to be here, now in this very moment having some quality of life. I talked it over for ages with with my partner and then with my onc. I put a post out here about it. I got back much wisdom, many peoples experience and much fear, these fears of course echo my own. On one hand there are masses of figures (and boy do they seem to differ) that tell me how much longer I MAY, in an unspecified time for and unspecified amount of time, survive cancer free and on the other hand, looking at having my life pain free now but living with the fear of what if/have I done the right thing. I guess it comes down to trust, I am trusting my onc to tell me what she considers to be the best course of action for me and seeing as she has guided me through the last year of treatment, have not found a reason to doubt her. I have found since stopping the tamoxifen that I feel better, the pains are gone and what I am learning to live with is the space rented in my head of what if. Got another two months till I go back and talk with my onc again about what next but so far apart from the obvious reasons for taking tamoxifen the only other thing I have noticed about not taking it is that I now have some breast tenderness. It is so hard to know what is for the best, but I physically feel so much better. I guess I am learning to live with my choice.
Very best wishes to you whatever you choose mukau x
Painful Joints!
posted Mon, 04 Apr 2005 09:28PM
sandie1
Hi Dorothy,
I will try & find Zipvit. My husband has had arthritis for about 20 years, he takes Brufen Retard which helps with pain but can upset his stomach. He has now been taking Gluc/Chondroit/MSM in capsule form (higher strength than the liquid I am taking)and he is suffering awful stomach pains & nausea. So he is going to try the liquid next as supposed to be kinder to the digestive system. You can't get this on prescription. I have been taking large doses of sage for my hot sweats/flushes now worried about this & yet was recommended by the hospital doctor in January!!!
Julie,
Good idea to print off & take to the hospital - may just do that!
Love to all,
Sandie
Sorry!
posted Mon, 04 Apr 2005 09:30PM
sandie1
Cancelled first posting as spelling wrong - seemed to clear so retyped & low & behold both appear!!!
mukau
posted Thu, 07 Apr 2005 04:52PM
dorothyiris2000
Hi, What you discribe sounds very simular to symptoms I have/had to some degree. The bad sleep pattern and depression faded somewhat for me after a year, a long time to put up with it I know, but I can only put it down to perservence. I quess maybe I just felt I had to put up with it as I'd rather that than give up the treatment. I'm too scared of the cancer, so I kept taking the Tamoxifen even though I felt it was causing all my problems. But then the chemo etc started it, before my bc diagnosis I was fit, healthy and rarely saw a doctor. Now I'm up and down to the GP all the time. I aged 20 years over the course of 6 months. I couldn't stop now, I'm half way through my 5 years of Tamoxifen. Things don't seem so bad now. I couldn't have done it without the support of my friends, and now I find these forums a great boost. I am glad that I didn't let the Onc talk me into taking those anti-depressants. We all make choices all our lives, I quess, I'll admit to being weak and easily led but I found I was just following what the onc was telling me until I found this forum. Suddenly I discovered a whole lot of women just like me, with the same troubles, and somehow it helps.
Well, sorry for this long missive but I suddenly felt I needed to share my feelings, prompted by your comments on dicisions, hope you all don't mind. But then I know you all understand.
Best wishes Dorothy
thankyou
posted Thu, 07 Apr 2005 11:05PM
mukau
Dear Dorothyiris2000,
I marvel at the fact that any of us make choices during these times, especially around life saving/mood altering/physical discomfort issues! I too appreciate having somewhere to write my head workings and know that whatever is going on (and I don't always know!), someone else will know/understand/have been there or considered it! Thankyou for your comments, I do understand x