I´ve read all your comments and I´m really concerned about starting taking letrozole.
At 58 I´m not as active as i would like to be , but I do walk my dog for at least an hour and a half every day through quite undulating countryside . This is my joy , I love it . However , I have had kneee problems for about 12 years , and getting worse ,now my one ankle and my back are stiff and play up at times . I take cod liver oil , glucosamine etc etc . I don´t want any more joint pain .
I came off HRT when I saw my mamagram and realised I had a problem ( last november ) the hot flushes and night sweats are horrendous , it makes me feel weak ,disorientated and my mood swings …!!!
If I´m a nightmare to live with now , what could I be like taking the pills ?
At the moment I´ve completed 8 of 25 rads ,should have started the pills five weeks ago , and I´m still dithering .
Am I stupid or what ?
Hi
No you’re not stupid! You’re questioning, which is a very wise thing to do. I can understand your fears - reading through posts where people have problems is really worrying, to say nothing of the list of potential side effects which accompany the tiny tablets.
I’m taking Arimidex - I started 5 weeks ago, but had delayed for a few weeks. I think they have similar listed side effects.
My onc said that if I have problems, she would be able to try something else (probably letrozole!) and my surgeon says he has very few patients who have bad side effects - most people cope very well with them. So, it seemed worth trying for me, and I haven’t suffered anything drastic so far - but I expect the impact is cumulative.
As you’ve already got some joint problems it’s a bit different. Have you had a bone density scan?
I also asked my onc about the real benefits - statistically - of taking Arimidex. I felt it was worth it for the reduced risk of secondaries over 10 years.
I wonder whether you need another conversation with the oncologist to understand the benefits to you?
good luck and enjoy your walks - sounds lovely!
River
jackwagstaff - I don’t think you are stupid, either. I get the impression from what I read on here that maybe Letrozole does not cause quite as many problems as Arimidex, but that may be because fewer people are taking it. I have been on it since November and I admit I have a bit of stiffness after sitting and I have neck pain, which I had to start with, but which has worsened recently. Apart from that, I am fine. I don’t have trouble getting out of bed in the morning, or walking. I know it is early days but I think it would be worth you trying the tablets. You can always stop, or change, if you have problems. Personally, I would put up with (almost) anything if it meant that I didn’t get a recurrence.
I know I keep saying this on here but have you tried Evening Primrose or Starflower Oil for the other symptoms? I have been taking EPO for several years and don’t seem to be suffering as much as the other ladies. I admit that I do wake up at night, I do get too warm, have tinnitus and my memory is rubbish, all due to low oestrogen I imagine, but I don’t have hot flushes or sweats as such. I am sure the EPO has helped. You would have to take it for a while to feel the effect, though. Like you, I was on HRT before diagnosis and so a lot of my symptoms are due to stopping that and I don’t think they are specifically caused by the Letrozole as I had them before starting the tablets.
Good luck with your decision.
Ann x
Thanks Ann and River for your comments .
I do sometimes feel like I´m walking through a minefield , not quite sure if where I´m going could be worse than where i am … if you get my drift .
I don´t want to put myself at risk of a reoccurance , but I would like to stay at least as mobile as I am at the moment , not withstanding the fact that I´m obviously aging on a daily basis ( Help !)
I next see my onc at the end of March , the day after I finish rads, and thankfully he does speak english , so I think I will have to have a long talk with him .
I took evening primrose many many years ago , but the list of supplements I´m taking at the moment is so long I don´t really feel I ought to take anything else . I think he´ll throw a fit when he realises that I´m taking sage , black coash and red clover as well as the cod liver oil , glucosamine .
Shake me … I rattle .I suppose another pill won´t make much difference , but I do prefer the "natural " ones , these others worry the life out of me .
Thanks ladies !
Hi all
Here’s the link to our ‘complementary therapies’ and ‘menopausal symptoms and breast cancer’ booklets which contain some information about some of the supplements some of you are taking so you may find them of interest:
breastcancercare.org.uk/upload/pdf/complementary_therapies_aug07_0.pdf
breastcancercare.org.uk/upload/pdf/Menopausal_symptoms_factsheet_BCC18.pdf
Our helpline is open weekdays 9-5 and Sat 9-2 if anyone would like to speak to one of our specialist nurses or trained helpliners about any supplements they are taking on 0808 800 6000.
Best wishes
Lucy
jackwagstaff - Just a thought but I am not sure that you should be taking sage, black cohosh and red clover as your bc was obviously hormone receptive and they contain phyto-oestrogens. There is much debate about this, however.
I understand that Evening Primrose Oil and Star-flower Oil (which are natural) do not contain them and neither do Cod Liver Oil and Glucosamine Sulphate. As you say, best to discuss it with your oncologist.
Ann x
Thank you Lucy , I´ve read the booklets . I will continue to take my assortment of herbal tablets until I see my onc , then I will have to have a really in depth discussion . I´m sure he´ll put me right and I can ask him all the questions I need about the letrozole.
Hi,
I’m just wondering if anyone else on Arimidex gets shooting/throbbing pains in the calves of their legs. I get a lot of joint pain but the pains in my calves gets really uncomfortable at times and I wonder if this is also a SE.
Esme x
Hi Esme
Just this week I had a dull aching in my right calf that seemed to move down the back of the calf and then up again. I did wonder if it was a clot as I work in a sedentary office based job, but the next morning it had gone. I can only put it down to Arimidex, I have been on it since the end of September 09 and have also been taking glucosamine chrondroitin and MSM tablets since before I started on the AI. I must admit that I do not suffer from horrendous problems that some people have and can only put it down to the glucosamine - I daren’t stop them in case the minor aches get worse. A lot of the aches are the same as I went through during the menopause so I put it down to the tablets working reducing the oestrogen which is good news, no food for the dreaded bc.
x
Hi All
just started arimidex 5 weeks ago.Have joint pain & stiffness. Am taking cod liver oil & glucosamine caps. They do help.Is anyone getting period pain but no period? Had chemo so am assuming am through menopause. Am 54 but think I was peri-menopausal?? before chemo.
Beldie
Hi Beldie,
I’m no medic (just 7 years of learning through living with BC!)I wouldn’t have though that they would put you on Arimidex alone if they thought you weren’t menopausal unless you’re having zoladex injections (to stop the ovaries from working)as I am as although blood tests have shown I was peri-menopausal after my chemo in 08 because of my young age(just 40)my system could possibly have kick-started again and I know that Arimidex does not work on pre-menopausal women. Did they test your blood before giving the Arimidex. Chemo doesn’t automatically put you into menopause - it depends on your body and age. After chemo in 2003 my periods stopped for 6 months but then came back as normal.
I would ask your oncologist or breast care nurse if you’re concerned.
Also just to say that I also got a lot of joint pain for the first few months of Arimidex but 18months down the line I hardly get any pain at the mo - just a bit of stiffness so I hope it improves for you too.
Take care,
Anne
Hi Everyone,
Thank you for that Pargayan. I have to say I was worried about clots too! I had a really bad bout of flu which lasted nearly two weeks, Doc thinks it may have been swine flu, who knows? Anyway I was quite inactive and was worried that it may be a DVT. The pain you describe sounds much the same though so hopefully just another of the annoying SE’s of Arimidex!
Hope I’m making sense, I’m babysitting my 2yr old Grandson and don’t seem to be capable of doing that and other things at the same time!
Esme x
Hi everyone
I have been on Arimidex for 15 months now and have really achey legs most of the time, especially when getting up in the morning or after walking a lot. Sometimes they hurt/ache quite a lot and I find it hard to stand up (without saying ouch). To get up from the floor I usually have to use a chair as my legs dont seem to have the strength to get me up without help. First thing in the morning they are quite stiff going downstairs so I hold on to the banister incase they buckle!!! I am 54 not 96!!! Eight years ago I ran a marathon!!!.. maybe thats the reason for the arthritis in my right hip but not the heavy/achey legs. What can we do ???
Not sure what we can do sadly. I have been on Arimidex for 6 months and my joints are causing more and more problems. It started with my knee and now I have a hip bursitis plus loads of stiffness especially first thing in the morning. I even have central back pain. I have never experienced these problems in the past. Oddly walking sometimes seems to improve things, even if my gait is rather strange!
Encouraging to see on this thread that the problem can subside, fingers crossed.
Chris x
I found this interesting article which is about oestrogen imbalance and it describes symptoms of low oestrogen really well.
surmeno.blogspot.com/2006/03/symptoms-of-estrogen-imbalance.html
How are you Chris?
Ann x
Hi Ann
That’s an interesting article… thank you for posting it,
I seem to have all of the side effects in various degrees of intesity!
the comment “…While low estrogen may make the fat pad on your belly larger…” Now I have something else to blame on Aromasin, next time my husband makes some comment about my weight gain!!! I will tell him that it can’t be helped and enjoy another biscuit without so much guilt!
Take care
Nicky
re joint pain
Just wondered if anyone suffered severe knee pain. I have severe pain in my left knee the dr x rayed it and said it was osteo arthritis not bad enough to have anything done so just to take painkillers and get on with it. Ok for him to say that its not him thats up during the night in pain and suffering all day. It has got worse over the 2 years i have benn on tamoxifen. Just wondered if anyone had suffered the same. Has anyone any tips.
Thankyou
Carolyn x
Carolyn
I am on Letrozole and I do find my knees get stiff when I sit and sometimes when I am lying in bed. However, it is not severe and I do sympathise that you are having such pain. I have come to the conclusion that the tablets exacerbate existing problems, as I have problems with my neck. It has definitely got worse. I imagine it is wear and tear, although I haven’t had it investigated because when I had a scan on my painful shoulder, that was what I was told then.
I do take cod liver and fish oils and Glucosamine Sulphate and Condroitin and I think they are helping. Have you tried any?
I know laurasue (Chris) has problems with her knee and has posted on here about it.
I hope you can get some relief soon.
Ann x