That was the original question, i wondered whether there was any research showing if arimidex was more effective taken at night, as some research has shown tamoxifen reacys better with the melotonin we produce when asleep. Reading all the replies has been really helpful and it has made me realise the best option is to check with your oncologist consultant/ professor at maybe 3-5 year periods. I will make sure I check again when (hopefully I will) I reach 10 years in 2017. I have been written off for annual checks due to cut backs in Wales.... 'get in touch if there is a problem syndrome' 😞 I will book the appointment 6 months in advance o the NHS, and if there is a problem ring his secretary direct - good Dr Foster website has details. I do agree though that taking arimidex is very comforting as it has had good results.
All you ladies that had a few or all nodes removed, do be careful. My lymphoedema has flared up because my swimming costume rubbed under that arm and I didn't notice as no nerves there. I do carry antibiotics and started as soon as i noticed the raied red patch about the size of a 50p. Skyped Dr daughter to show her and she has made me draw round it so that if it continues to increase another visit to the doctor will be called for.
Jennyfromwales - after reading your post I went back to my sheet with my tablets. You can tell I still haven't got my head together right yet - it said not to take within 2 hours of meals ........ with eg banana and wheat cereal. I have those for breakfast, and concluded that it was 2 hours either side of meals full stop! No wonder I was finding it hard to work out good times to take my tablets! Thanks for sending me back for another read of the instructions. Jo x
When I started taking Anastrazole/Arimidex, I was told 5 years (I'm 63) and nobody has mentioned staying on it for any longer - not yet anyway.
I had my DEXA scan before I started taking AIs and wasn't surprised to find I already had Osteopenia as I have rheumatoid arthritis, and my mum and grandma both had osteoporosis. As I was at risk anyway, the possibility of it becoming osteoporosis hasn't been to big a problem - whereas losing my eyesight (I'm already blind in one eye) would be. I take Adcal +D3 among my cocktail of drugs for my many and varied problems. I will have DEXA scans every 2 years, and would happily take Anastrazole for the rest of my life.
I suppose the AI vs Tamoxifen debate depends partly on one's attitude to risk. As far as I am aware, all thing being equal, the risk of bone-thinning with AIs is far higher than the risk of eyesight problems with Tamoxifen or the risk of Osteo Necrosis of the Jawbone with alendronic acid. Personally I don't see any point in continuing to take an AI after 5 years if the evidence is that it's no more beneficial as an endocrine treatment at that point than Tamoxifen. I am now 52 and the thought of experiencing bone-thinning and breaking a hip is horrendous. I take calcium tablets and regular weight-bearing exercise and my regular DEXA scans have shown no deterioration (beyond age-related effect) over the 4 and a half years I've been taking AI. In fact my oncologist believes the recent research which has apparently shown that Tamoxifen can actually reverse some bone-thinning.
Yes I take ad cal too, chewable morning and evening no food restrictions, but my doctor daughter says that won't increase bone density lost from arimidex. I have regular bone scans and osteopenia especially right femur. I was taking alendronic acid but stopped as I need some dental treatment and a side effect can be necrosis of the jaw! I am going to see my doctor and ask his advice for another bone density medication.
Hi Jenny, that's a problem with arimidex, but hopefully everyone put obn it will have regular cexa scans and be put on something to help the bones if there's cause for concern.
I was put on Adcal, which are quite pleasant, lemon flavoured - I hate things with false flavours, whatever food or drink they'are in and couldn't imagine taking the other flavour, fruits of the forest. I'd rather have them plain, no doubt tasting of chalk.
My problem is remembering to take them; I ought to read the leaflet with my sensible head on (if I can find it, the sensible head, not the leaflet, that doesn't get lost like my head does!); it says 2 hours before or after food, which I took as not within 2 hours of food - but that seems to work out quite difficult for my life at the moment, even with a strip in the kitchen, the bedroom, the car and my handbag.
Take care, Jo x
The research I read showed that Tamoxifen was most effective taken at night when it interacted with the melatonin produced during sleep at night. It also said that any light seeping in disrupted the production of melatonin and advised to sleep with a sleep mask or in a blacked out room. I wonder if the same applied to arimidex and have started taking it at night as a precaution. I personally would not want to take Tamoxifen because of possible eyesight side effects described by my optometrist, and I understood that arimidex was more effective but the bone thinning side effects are a problem.
I started on Arimidex a month before my mx in June, and was told I would be on it for 5-10 years. I've been put on Adcal to strengthen my bones as the dexascan showed I'm borderline osteoporotic, and will have ddexa scans every 2 years to see what's happening to my bones. I used to take fosamax for about 7 years, as I wasfound to be borderline then, when taking part in trials at Oxford.
I take the Arimidex at night, spaced out between the second of my Adcal and Amitriptyene, which I've taken for about 5 years because of pain in nerves around shoulder and down to other breast area following 4 lumpectomies. I'd be interested to know when others take Arimidex and wonder if there's any research on things such as time of day its taken.
I was diagnosed in 2009 and was told when I went onto AI after 'active' treatment in 2010 that I would be on it for 5 years, over the course of the intervening years this then changed to 7.5 years and then 10 years. More recently, my oncologist told me in May this year that latest research shows that there is no benefit to taking an AI for longer than 5 years so she is switching her patients to 5 years of Tamoxifen once they've completed 5 years of AI. Furthermore, her opinion is that the risk of bone problems is significant and would also be a good reason to switch to Tamoxifen after 5 years. She did admit that patients who have now been discharged are not routinely reviewed as regards how long they take AIs. Therefore, if they were told 10 years or longer on AI then that is what they continue to do, oblivious to any new recommendations because they no longer have regular consultations with an oncologist. Therefore, with her agreement, I intend to arrange occasional case reviews with the oncologist after I am discharged in order to ensure that my ongoing endocrine therapy is in accordance with latest recommendations.
Of course, oncologists' opinions will vary. After all, opinions are like noses - everyone has one!
Sorry I don't have a link to the relevant latest research but would also be interested to know. Would also be interested to know results of any research about the best time of day to take AI/Tamoxifen.
well done JennyfromWales, you are doing well and exercise is always good for you whatever your age and even without a cancer dx - I am very impressed - I am very interested in any research concerning arimedex as I too have been taking it for 4 years now - and I have been told different things throughout my treatment. Initially in 2010 was told it would be for 7 years, then told it would only be for 5 years - it seems though that ladies who take Tamoxifen for five years can then go on and take Aridimex for life - and some ladies who are diagnosed stage 4 get it prescribed for life (or as long as it is effective). I am due to see my consultant in August and whilst I have one year to go on Arimidex (I think) I am quite nervous about coming off it and if I did get the chance to keep taking it I would do so. Does anyone know where I can find the latest research on this and what the up to date thinking is - perhapps BCC can help? I too have no side effects from the drug.
I was diagnosed in 2007 and had a mastectomy with two positive axillary lymph nodes, and I had a complete node removal at the same time as my surgery. At my 5 year check up my consultant, a professor, told me I would be taking anastrozole for life as research showed good results when the medication was continued after 5 years. The crippling joint pains stopped after 2 years helped by daily swimming, and I do have regular bone scans to monitor bone density. After two fractures I was prescribed alendronic acid but stopped taking it when I realised it could affect invasive dental treatment, extractions etc. I understand research with rats shows that tamoxifen taken at night is more effective as it interacts with the melatonin the body produces, and I wondered if anyone has heard if this could apply to anastrozole too? Good news, I am in my late 60s, and despite lymphoedema in my arm I swim a mile most mornings wearing a compression sleeve, and I have joined rambling groups and I walk about 40 miles a week!