Breast Cancer Now Forum

I absolutely agree with you. My GP specifies Accord brand which is the one which suits me. My oncologist wrote to him. I’ve been on it since 2017. In my experience the joint stiffness mainly in my hands, hips and knees lessened with doing more exercise and losing weight. I take Seven Seas Joint Care Plus every day as it contains Glucosamine for joints.  ... View more

Hi, it took at least a year to get used to Letrozole, I used to have stiff painful knees and hip joints when I got up to go to the loo in the night and in the day if I’d been sitting for a while. I’m sorry to hear you have depression, can you speak to your breast care nurse? I found them very helpful suggesting things. I practise yoga, mindfulness and exercise at the local leisure centre and walk quite a bit. I’ve had depression too but it’s worth persevering. Hope that helps. ... View more

 Hi, I haven’t posted on here for ages, but just to say I’m over halfway through so been taking Letrozole for 5 1/2 years. I take Seven Seas Joint Care Max which works for me as I have no joint pain, just leg stiffness sometimes. Exercise and keeping my weight down (I lost 2 1/2 stones) helps a lot for me. I take Accord brand and think my body has got used to Letrozole.  ... View more

Hi, there, I've been on Letrozole for 4 years now and can honestly say that Vitamin D, Glucosamine and fish oil capsules plus  weight bearing exercise have worked wonders for the joint pain I experienced for the first year or so on Letrozole. I used to take Turmeric too but it gave me heartburn eventually so had to stop it.   ... View more

Hi jamjam Good to hear you’re getting sorted with the right brand and wishing you a happy birthday coming up. Always good to hear positive results.  ... View more

JamJam, I’m so sorry to read how terrible things are for you, and I echo what Gailey said. Please don’t give up on this life saving drug and speak to your GP urgently. Can you ring your Oncologist’s secretary at the hospital and get an urgent appointment with them too? It will probably be over the telephone I know, but they need to know what you’re going through.  Sending you a hug. ... View more

Hi jam jam, Could you ask your Oncologist to request your GP to prescribe the brand? That’s what I did. I’ve found independent pharmacies are freer to use whatever suppliers they want to ensure they can get the brand of Letrozole stipulated on the prescription. Hope that helps. ... View more

Hi,  If it was evidence based practice ( and I am a retired Registered Nurse so know a lot about this) then it would be standard practice across the UK for Oncologists to prescribe Vitamin D and calcium. They do not. Partly as they can be bought as OTC (over the counter) tablets or online. The NHS conducts audits to ensure practise is evidence based, this is quite rigorous. It is of course up to us as people who have had cancer to read up as much as we can to optimise our health and believe me, I have done this and still do. I find your comment quite rude.   Regarding Oncology follow ups, my last one was telephonic and I wasn’t impressed as the copy GP letter I received didn’t reflect accurately what we had discussed. My next one due shortly is also telephonic. They are yearly.  I agree a physical examination in a face to face appointment is much better, but Covid19 has affected so much.  ... View more

Hi Yvonne, Just to add to this debate that Vitamin D and calcium as you say are necessary for bone health, but ensuring you have a good dietary intake should be enough. Regular weight bearing exercise is important too, as is avoiding smoking and excess alcohol. Vitamin supplements aren't the go to. 6 monthly checks by oncologists aren't standard care,  at least not where I live. Perhaps this is different in your area.     ... View more

Hi, I’ve been on Letrozole for 3 years, and I don’t know if this will help, but I asked my GP and Oncologist to request Accord brand of Letrozole for me as this is the brand that gives me less unpleasant side effects. Secondly, I changed to having my prescription sent to a large Branch of Boots as the seemed able to  order and dispense Accord more easily than the small branch of Lloyds I had been using. I have further to travel, but peace of mind. Thirdly, I have found taking a joint supplement containing Glucosamine, omega 3 fish oil, & vitamins C & D has helped enormously.  Keeping active by exercising has helped me too.    ... View more

Hi Gwyneth Interesting to read that you've had issues too and sorry you were experiencing more side effects. Perhaps a different manufacturer uses another coating on the tablets. I'm thinking of asking my GP to prescribe 4 months worth instead of 2 so that when I can get hold of Accord brand I don't have the same problem in another 2 months. It's bad enough having to be on these for 10 years. All the best. ... View more

Hi, I asked my GP to specificy' Accord brand only' on my Letrozole prescription, but last November my pharmacy couldn't supply it and I was left ringing around different pharmacies when I was down to my last couple of tablets! I thought they were supposed to order it in for my especially but they said there was a problem with the supplier. Has anyone else experienced this? I had to travel some way to a Boots pharmacy who fortunately had some. ... View more

Hi All i hope you don’t mind me contributing to this discussion. I’ve been on Letrozole for 21 months, I used to get very stiff joints and felt as if I was in my 90’s having to heave myself out of a chair and hobbling around if I had sat down for even a short while. My fingers were also quite stiff in the mornings and I had regular hot flushes. I was on the verge of giving up Letrozole but my GP prescribed the Accord brand as that was easier to cope with, and so that is the one my pharmacy supplies me with. My oncologist said he often meets women who seem to get on with one brand better than any other.  I did some internet research and started taking a high dose of glucosamine (1500 mg) every day plus fish oil capsules. Seven Seas Joint Care Max is the one I use. I also read that counter-intuitively exercising more despite the stiffness would help. I gradually increased exercising (aquarobics as it’s gentle on the joints), yoga, gentle exercise classes and walking more. The joint pain has disappeared as has the finger stiffness, and I feel more like my old self. I had a free course of acupuncture at my hospitals Macmillan centre to help with the hot flushes and night sweats. The night sweats stopped and the hot flushes are fewer and not so bad. For me it was not an option to give up as my tumour score was 8/8 for oestrogen and progesterone. Hope this helps anyone thinking of giving up. Please persevere. ... View more

Hi Eva, joint pain is a known side effect of Arimidex. All the aromatose inhibitors block the production of oestrogen and block the uptake by receptor cells in the tumour. The information leaflet with your tablets will explain this. I have had the same stiffness and joint pain which exercise has helped with. You don’t say how old you are but I’m guessing post menopausal to be prescribed this. It could be a degree of osteoarthritis too which is what the X-rays are for. Glucosamine and chondritin available over the counter to help lubricate the joints may help and have you considered swimming as that is non weight bearing exercise. Hope this helps. 🙂 ... View more

Hi, I’ve just read your post & I also kept most of my hair using cold cap. I waited about 5 months before I had my hair coloured and they did a colour test first in case my scalp was sensitive. I still use Doctor Organic Aloe Vera shampoo and conditioner and I’m nearly a year post finishing chemo. I also didn’t use hair straighteners. Hope this helps. x ... View more

Hi dancingpip, I just feel I have to reply to your querying why someone has been prescribed Letrozole which is going to sow seeds of doubt as to whether her Doctors know what they are doing. They know her diagnosis, you don’t. Her tumour may have tested ER & PR positive for which she needs an aromatase inhibitor to reduce the chances of it returning. I’m all for researching and reading up - I persuaded my Oncologist to give me a weeks breast boost added on to my radiotherapy although I’m over the age limit. I just think we have to encourage people to work with and trust the experts. ... View more

Hi Alibobs,  Everyone’s response to Letrozole is individual and you probably read more of the negative side effects here so people can support one another. I’ve been on Letrozole for three and a half months and only started feeling side effects after about 6 weeks. On the advice of my breast care nurse I have been having a free course of acupuncture at my hospital’s Macmillan centre and after the first one I felt an immediate improvement in reducing night sweats and hot flushes. My breast care nurse said side effects seem to peek at about 3 months and then tail off. My surgeon said reflexology has worked for some of her patients. As a nurse of 40 years myself it’s good to see other health professionals recognising the role complementary therapies have to play alongside conventional treatments. I’ve increased the amount of exercise I do and eat healthily, but it’s important to eat some dairy products to get enough calcium in your diet as Letrozole can cause bone thinning. I choose the lower fat versions. Hope this helps x ... View more

Hi Octavia, Well done for coping so well. Yes the forum can be a great support just knowing there are other people out there going through the same thing, and picking up tips and ideas. I was diagnosed with breast cancer earlier this year so had surgery,chemo and radiotherapy, now on Letrozole for 10 years. I find exercise really helpful so I've taken up aquaerobics again which I do once a week. Also Pilates once a week and gentle yoga at my Macmillan centre. The night sweats and hot flushes have drastically decreased since starting a course of acupuncture a month ago. In fact the night sweats stopped after the first session so that was brilliant. I am taking the Accord brand as that was what was first dispensed to me and having read that ladies have less problems with that brand I've asked for that one specifically when I need repeats. I definately agree with you that keeping active helps and I try to go for a walk most days. I'm 62 and if I need to have a sleep in the afternoon I do, I just listen to my body. All the very best to you. x ... View more

Thanks Happyboobs 2. I’m exercising more too and eating healthily. Take care. xx Hi Anne all the best to you too. xx ... View more

Hi All I started my first acupuncture on Wednesday at my hospital’s Macmillan centre and so far haven’t had a night sweat since and my hot flushes the last two days have definitely been fewer. So onwards and upwards. I have to take Letrozole for 10 years as my Breast cancer was high risk, so stopping it isn’t an option. xx   ... View more