Breast Cancer Now Forum

Hi Sparkle66 I can honestly say, after being on Letrozole for over 4 years now, that there is not really a better time of day to take this.  It will depend on whether you get any side effects from it and then you can tailor taking this to help with those.  I have found that if I take it in the morning I will get hot flushes through the day and if I wait until the evening then I get hot flushes in the night.  With regards to the Adcal tablets, I have only ever had the chewable kind, some are definitely nicer than others.  When I get one that is not very pleasant I just ask the pharmacy not to give me that make.   Regarding the bone scan, your local hospital that has a bone density scanner will be in touch to arrange this as soon as they get the request from your medical team. It may be worth just contacting someone and asking if it is in hand.  I had to chase my oncologist to book this for me on the second one but I am a private patient so things are a bit different.  Hope the above is of some help, try to stay positive and keep an eye on the light at the end of the tunnel. ... View more

Hi Redeemed36345 Just wondering if you can let me know which brand of Letrozole caused the lip problem as in the last two weeks my lips are dry, cracked and get red and sore.  Have tried lip balm but this seems to only work for a while and then I am back to the uncomfortable feeling. I was taking Accord which seemed okay but my pharmacist gave me Amarox (new one on me) which funnily enough I have now been taking for 2 weeks.  I have also noticed that my skin is drier.   I have another six weeks supply of these so am hoping that after that I will get prescribed something different.  Thanks.       ... View more

Hi All Just read the various comments regarding side effects and thought I would just update after yet another year on this drug. I have now asked my pharmacist to add Cipla to the not to be prescribed list as I have found that this after a couple of weeks gives more severe hot flushes and prickly itchy skin. With regards to dry cracked lips, I thought this was just because of it being winter but maybe it is not, but can confirm that I have had this on and off since about November. It does seem to get better then get worse again but have not put it down to Letrozole, will have to monitor I recently had a telephone consultation with my oncologist who told me that I should insist on having the same make of Letrozole for the entire 5 years as if you keep changing this is likely to increase the side effects and that everyone reacts differently to different makes. He is a research lead in Breast cancer care so am assuming he should know what he is talking about. However, I know my pharmacy will not do this as I am sure that I just get whatever make they managed to buy at the cheapest price. Will continue with the drug though as I cannot believe that this would be prescribed without good reason.  Take care all and keep safe and well. xx ... View more

Hi Jippy   I have had Cipla on quite a few occasions, my pharmacy quite often give me a different manufacturers tablets each month, but it does not seem to be any worse than any of the others that I have had. All you can do is try it and see how it goes. Some people react to some makes and some people don't, there doesn't seem to be any hard and fast rules. You should be able to change from Cipla if you find it is not good for you,  just  ask either the pharmacist or your GP.  Wishing you well. xxx ... View more

Hi All   Have just read your comments on Letrozole and thought I would share my experience so far. I was diagnosed in July 2018 and following successful treatment have been on this drug for 13 months. I can honestly say that different makes have different side effects and seem to be different for everyone. I had a follow up appointment with my oncologist a couple of weeks ago and he even said that his patients all report different symptoms on different makes. So far I have been given six different sorts by my pharmacy and only one has had really nasty side effects - Sun Pharma - so have a note on the prescription not to be given that one.  I am not too keen on Cipla as joint pain seems a bit worse on these but have had no real trouble with any of the others. My side effects, apart from the joint pain, are hot flushes, mainly on waking, some weight gain (which I found out from my oncologist is also caused by some water retention due to the Letrozole - not mentioned anywhere on the paperwork I have read!) which is difficult to get rid off, fatigue which doesn't seem to change regardless of sleep amount, hair thinning, though luckily have quite thick hair so not too noticeable and of course the memory thing - I seem to forget the most commonplace names of things and end up saying 'you know thingumy or the thingumajig that you use to do whatever'. When I chatted with my consultant surgeon he said it was such a shame that having successfully operated, blasted us with radiation we are then told to take a tablet that has various side effects which you then have to endure for five years.  My only comment to him was 'well one down and only four more to go!' Love to all and keep on with the fight xx ... View more

Thanks Naid,  Glad there are more of us! Xxxx ... View more

Thanks SmallPickles,    Sorry for late reply, thanks for the information, the mammogram nurse called them clips as well. Glad to hear your biopsy was all clear.   Hugs and best wishes     ... View more

Thanks Jill, It was actually my consultant surgeon that put the pins in at the time of my surgery, he thought he had told me! Glad to hear that I am not on my own with weird bits of metal. ... View more

Hi Louise   Glad to help, hope all goes well.   Love & hugs to you. ... View more

Hi Louiseh, Just seen your post regarding twinges in your breast on the other side to the surgery site.  I had a lumpectomy last August with a second operation to remove a bit more to give a clear margin. I then had 15 sessions of radiotherapy which finished early November.  Earlier this year I noticed a slight swelling and also I was getting twinges and a bit of pain on the opposite side to the surgery.  I have since seen my surgeon for my one year check and glad to say the swelling is perfectly normal, slight water retention, a result of the surgery.  He recommended massaging out and away from the nipple which should encourage this to go. Then he mentioned that I had radiation scarring opposite to the excision site, again massage should help this, felt a lot like the scarring on the excision site to me, lumpy and a bit uncomfortable.  I must admit I was dreading this check as I was convincing myself that there was something wrong.  Hope that this helps, my surgeon told me after my surgery to massage with Bio Oil and to use this to reduce the swelling and the radiation scarring. Hope all goes well. ... View more

Hi madmaggie   I know exactly what you are feeling, had my one year mammogram and follow up with my surgeon yesterday. But over the last two to three weeks have been working out in my head what I would do if not given the all clear. Kept all my work up to date so if I was off for treatments, my colleagues would be able to find everything, worked out my social calendar so no clashes, literally left the whole of this month clear of any appointments. Disturbed sleep and then grouchy because of being tired and all the time the nagging in your mind of what will be the outcome. Glad to say that I was all clear, mammograms fine and surgeon happy with everything, next check up with him in January 2020. Just to be able to put this down in writing has helped and reading that other women get the same anxieties is a great help. Hope all goes well with two year check.  ... View more

Hi Mel Sorry to hear your news, I know how you are feeling. I had two lots of surgery, my surgeon cut into a smaller second tumour while removing the one picked up on mammogram so margin was deemed not clear. I was honestly alarmed that it was another tumour that the mammogram or ultrasound had not picked up but was assured that it was so small it was not surprising. There is light at the end of the tunnel so just sending you love and hugs. xx ... View more

Hi I was diagnosed July 2018 and have now finished treatment apart from AI for 5 years and my travel insurance on an annual policy increased by over 50% when I disclosed. As soon as I mentioned the word cancer I had to answer a whole raft of questions, a lot of which were not pertinent to my diagnosis. I came to the conclusion that they just have a standard list which they recite. In the end for worldwide annual cover I was charged an extra £65 by Virgin Travel. I am glad that I did tell them though just in case I ever do need to claim. My mum was diagnosed 15 years ago and she did not have to declare this to her insurers after five years of being clear.  ... View more

Good luck with your appointment Mel, hope it is all positive. x ... View more

Hi Mel Sorry to hear that you are still waiting for your results. Does seem a long time, hopefully your BC nurse may be of help, maybe she can speed things up. Sending you lots of love and hugs at this time and keep your chin up. x     ... View more

Hi GillyT Meant to reply yesterday but ran out of time. I have been on Letrozole now for jut over 5 months and have found that the depth of the hot flushes seems to change depending on which manufacturer your tablets are made by. At the moment I am on one that I really do not like, really bad hot flushes but not very frequent which I suppose is a plus.  It may be worth asking your doctor if you can try a different brand and see if the hot flushes improve. Hope that this helps, there are quite a few threads on hear about different brands and how they affect people differently. Good luck and at least you know that there is an end date to taking this drug.  ... View more

Hi, just wondering if anyone else has been prescribed Letrozole by 'Sun Pharmaceuticals of Spain', no actual name like Dr Reddys etc?. This is the latest prescribed AI that the GP pharmacy has given me, now my fourth different brand in five months.  Anyone else had a similar experience? Thanks ... View more

Hi 3331melanie, had the blue die injection last August and still have blue nipple, not as bright as at first but still there. My consultant told me that he had one patient that still had a blue nipple two years later, definitely a talking point!! ... View more

Hi all, well Dexa scan done and told results unofficially at appointment and then received a full report 6 days later.  Have osteopenia which the nurse doing the scan said was my results were within the normal range for my age and to continue with the Adcal and eating a healthy balanced diet. Full report said much the same and the recommendation was a further scan in two years time. So all in all quite relaxed about it, now just have the one year mammogram and consultant appointment in July to worry about!  Hope all is well with everyone. ... View more