Breast Cancer Care Forum

Daylily1803 · ‎17-02-2019

Hi Cathy thank you , these drugs seem to cause such significant problems. I so echo your symptoms. 😟 I am very close to stopping them all together fed up of feeling so miserable , have osteoporosis, osteoarthritis, blurred vision, dizziness which no body seems to attribute to letrozole. Every single day is a challenge , whilst my mood reduces alongside it. Before I started them I was fit and healthy enjoyed a very active life ...... i saw my breast surgeon last week, she always seems to think that my symptoms are something to get in with 😕 , she was hoping that I had stayed in tamoxifen, anyway as I have another area of pain in my spine she is going to send me for a nuclear bone scan. i shall go and see my GP see what he says. best wishes Bernadette

Daylily1803 · ‎16-02-2019

Hi , i have read your post with interest could I please ask which brand your taking ? I am really struggling at the minute. I have tried several and found that the Accord brand was ‘better’ than some of the others. But my quality of life is rapidly reducing so need another perhaps to try. Many thanks

Daylily1803 · ‎27-01-2019

Hi I was diagnosed with er/pr 8/8 breast cancer just 3 years ago. I was treated with letrozole following a mastectomy and immediate reconstruction. Yesterday I had significant pain to the side of the chest area very close to the breast. Today whilst I was in the bath , I noticed quite a large area which is ‘thickened ‘ in the same area as the pain. Not painful unless I press harder , but very definitely a change. I found a thickened area in the breast when initially diagnosed so that makes me worry about it. I am due to see my breast surgeon on the 9th Feb for annual review. What do you think ? Should I see someone before then or shall I wait to see the surgeon? Is it anything to worry about ? Silly question I know , I don’t want to worry my husband so needed to ask the question and ‘talk to someone ‘. Thank you.

Daylily1803 · ‎28-12-2018

Hi TP, I can so empathise with your difficulties, I started taking letrozole almost 3 years ago, the joint and bone pain were just so debilitating, I suffered my first fracture after 15 months. I have recently been changed over to tamoxifen by my oncologist having only taken it for 4 months I cannot take it any more , I suffered with terrible hot flushes both day and night. I too am a nurse working in the community. I have sen my GP this week and agreed to stop the tamoxifen and return to letrozole although I must say I am really considering stopping this treatment altogether, my quality of life is significantly affected. I have tried different brands of letrozole and thought the brand I am on suited me better .... perhaps not. I am due to see my breast surgeon in February so will discuss this with her at that time. Not many options have we ?. Sending you very best wishes.

Daylily1803 · ‎02-11-2018

Morning, sorry to hear that your suffering as well. It’s quite debilitating isn’t it. I don’t feel as unwell on the tamoxifen, my joint and bone pain isn’t as bad as it was on letrozole, I still have them particularly in my ankles , bone pain struggle sleeping at times. I have started taking CBD oil which does help me sleep. I have recently seen my consultant who sent me for x-ray on my spine and repeated blood tests , the plan is to continue on alendronic acid , adcal , repeat DEXA next July before my appointment so I can discuss the results immediately. I really struggle emotionally at times with it all. We all go through so much in our journeys and I know I put on a very brave face each day. Hope that your pain eases soon , have a lovely day. Xx

Daylily1803 · ‎20-10-2018

Hi curlylocks , oh goodness me you have also been through such a lot. It never sits comfortably with the ? Of mets always lurking. I have been seen by a consultant who specialises in Osteporosis with Breast cancer , he referred me back to my oncologist who has taken me off letrozole , she said that it was causing my joint and bone pain , which were at times unbearable I felt so unwell. I started tamoxifen beginning of September and up to Now feel much better. I can’t say that all my pains have gone but nothing like it was on letrozole ! I haven’t had any follow up scans to check for any more fractures but I recently was seen again at the Osteporosis clinic , I recently hurt my foot after stepping off 2 steps , I thought that I had fractured a. One in my foot but didn’t. I have had new symptoms in 2 places in my spine ( Osteporosis is all through my spine ) with pain in my lumbar area going through the back of my leg and also in my neck. I was sent for x-ray only on my lumbar region to see if I have a compression fracture that was only earlier this week , so no idea what the results are. I have to carry on with the alendronic acid and adcal review next year after another DEXA scan. Get really fed up at times have bone pain from my rib fractures, been having Breast pain in my ‘good breast’ but get up like we do and go to work with a smile on my face. I hope that your doing ok , thank you for your message xx

Daylily1803 · ‎12-08-2018

Morning I can so empathise with you. When I look back in the date if that initial post I can say that the pain is still the same. I have recently been to see an Osteporosis specialist ( yes ended up fracturing one rib just by putting something in the back of the car 15 months after I started taking letrozole ). He did quite a lot of blood tests , bone turn over markers , vitamin D ( low levels can cause joint pain) he also sent a copy letter to my oncologist I have recently seen her , she was kind enough to recognise that nobody was helping me 🤔, she said that it was the letrozole causing my pain. She has given me a month off and then I will start on tamoxifen. I am worried about the side affects of another drug but at least my bones won’t be affected any more. I take my meds at 6 pm which was ok for me. I wish you well and hope that your side affects reduce. Xx

Daylily1803 · ‎30-01-2018

Hi Ann, thank you for taking the time to reply. I have spoken again with the Breast care nurse, who has spoken to the oncologist and she stated that my Breast consultant is able to deal with changing medication If necessary. I am abit disappointed really, I find my Breast surgeon very difficult to talk to , But here goes I suppose, I shall compile a list of questions. Yes I need to know if this is the right treatment now for me, I can’t continue to break bones and I feel that this hasn’t been considered by the consultant. I will ask my Gp to refer me to an osteoporosis specialist for oversight. Many thanks 💐

Daylily1803 · ‎29-01-2018

Hi everyone, I have been on letrozole for nearly 2 years, I suffered with a fractured bone in may 2017, after pleading with my gp to be referred for further investigations ( as he didn’t believe that I could break a bone so easily) I was referred for another dexa scan following which I was diagnosed with osteoporosis, commenced on alendronic acid then referred for a nuclear bone scan which I had in September, repeated in December 17. i have been waiting for the results, ‘my case’ was heard at MDT meeting last week. I had phoned up the Breast care nurse to inform her about my recent fracture so that the consultant could be made aware before the discussion last Monday so decisions could be made with the most accurate information. I have stopped taking letrozole , last week thinking that my treatment would be changed to something kinder on my bones. Well today I spoke with the secretary who told me that the consultant was happy that my bone scan was stable and that treatment is to continue...... i am really shocked by the lack of oversight into my case and feel that they have only looked at the bone scan, not taking into account the 2 fractures I have suffered in 7 months, so things are not as stable as the scan suggests. I expected a referral to an osteoporosis specialist, (which should be the path followed ) for insight into my bone health and a change of medication. How Can I continue to take this knowing that is destroying my bones ? The alendronic acid can take up to one year to make a difference. I have aready spoken with the lovely staff on the helpline and have requested an appointment with my oncologist, I will ask my gp to refer me to an osteoporosis specialist. I am just wondering if there is anyone who has experienced this and what your experience has been. Thank you all 🌹xx

Daylily1803 · ‎20-07-2017

Hi Sue, it's nice to know that your mums coping well. It's just a shock feeling better this morning. I am sure that I will be fine just seems to be one thing after another. Best wishes Bernie xx

Daylily1803 · ‎20-07-2017

Hi, I too have been on Letrozole for 18 months, I take it in the evening and haven't had side affects with nausea. I usually take Accord brand which for me gives me the least side affects, if I take another brand I suffer with terrible joint pains. Some chemists will order your preferred brand in , although it can be hit or miss though, I try several pharmacists and I found that if they have Accord in stock they will put it to one side for me. A baseline Dexa scan should be done as you start on Letrozole, I had one as I started on my treatment and recently requested an earlier one due to hip pain. I also find that using a hot wheat bag , particularly in winter time helps me tremendously, I try to avoid taking pain relief as I would be taking them every day, I do take them but prefer to limit amount to avoid side affects. Xx

Daylily1803 · ‎20-07-2017

Morning Sue, totally unexpected, I have been started on alendronic acid once weekly. I didn't get much information from my Gp really, he is very good but I think I challenge him with my questions. I did look online at the website for the National Osteoporosis Society where I found information about taking calcium supplements, on the day of your treatment they don't recommend that you take them as they prevent the Alendronic acid from working properly , no mention was made about this either by my Gp or pharmacist. Considering that I take it twice daily it's quite significant. However I contacted the helpline and spoke with a lovely lady Who gave me lots of advice in terms of follow up, which is by the Gp , length of time on medication, exercise things to avoid being careful particularly in terms of getting in and out of the car, ( I am a community nurse so do this a lot). I think the initial shock of being told this my mind certainly jumped to the worst case scenario however having had time to think and read further information I am glad that I requested an earlier scan so at least I can start treatment now. It is quite shocking though to think that in 18 months of being on Letrozole this has happened. I am sorry to hear about your mum, osteoporosis is another silent disease we don't know we have it unless we are screened. Does she manage her life much as before ? How has she managed on her medication, there are strict guidance on how to take it isn't there ? Does she have any restrictions within her day? I found out that there are many other alternative ways of taking this medication , intravenously, 3 or 12 monthly however there is a limit on the length of time that you can take these which is significantly less than the table form. Thanks Bernie xx

Daylily1803 · ‎19-07-2017

I have just come out from seeing my Gp I now have osteoporosis in my spine 😢

Daylily1803 · ‎18-07-2017

Hi Sue , yes the joint pain is terrible isn't it, I have found some brands of Letrozole particularly troublesome, the brand I prefer which gives me less side affects Accord tends to be difficult to find unfortunately, so I am currently trialling some other brands to see what suits. This is hip pain is something new for me and probably something that I would have put down to ageing etc if it hadn't been for my friend. I only saw my oncologist once once after my diagnosis, I seen my breast surgeon six monthly and my plastic surgeon more regularly. Oh oh I hope so too thank you for your reply and kind words, it is so lively to be able to chat with people who really know what you are hoping through. Sleep well I will update tomorrow xx

Daylily1803 · ‎18-07-2017

Hi thank you so much for your reply. So many things are in my head at the moment. I know that I haven't dealt with what has happened to me because I was more worried about my dad, he died in February 16, so only a couple of months after my surgery terrible terrible time for me and I feel his loss each and every day. Oh I do hope that it is only ageing that is causing my pain, at the minute I am finding it hard to consider any other than more cancer. My friends who are nurses have all tried to reassure me ..... the pain relief you have been prescribed seem to have really made a difference for you, I will see what the scan results are tomorrow and have it on my list to ask. Oh gosh I could do with some of that tonight to help me sleep. Anyway not long to go now keeping everything crossed , thank you for your reply and kind words. It can be a very lonely place this journey, I have the most amazing husband but hate to burden him with my worries, he has a difficult job which he needs to fully concentrate on so I try to limit my worries on him. Sleep well thanks again xx

Daylily1803 · ‎18-07-2017

Hi rubycat, I have just had my second scan , earlier as I was having hip pain. I have been recalled to see the Gp within 4 days of having my scan, so extremely anxious like you are. I love your analogy PIFU which is how I feel. I have my Gp appointment in the morning so feeling very anxious. Xx

Daylily1803 · ‎18-07-2017

Hi, I was diagnosed with bc in December 2015, decided upon a mastectomy with immediate Diep reconstruction. Commenced on Letrozole with Adcal following Dexa scan. I feel that I have been started on this medication without any idea of what monitoring needs to happen throughout the duration of this treatment. My Gp wrote to my oncologist to obtain some clarity for me at the start of this and didn't receive a particularly helpful reply with 'regular' as her response. Before I was diagnosed my lovely dad was diagnosed with stage 4 stomach cancer, so as you can imagine my head was all over the place. Eighteen months on I feel very anxious about every new lump , bump and pain, especially as a work colleague was diagnosed totally unexpectedly with stage 4 breast cancer many years after her initial diagnosis and treatment it is in her brain, bone, lung, liver. It has totally knocked my confidence for 6. However it has made me very aware of recognising any new symptom that I have which over the last 3 months or so has been hip pain, both hips worse on one side. I have been to see my Gp and requested an earlier Dexa scan, only by a couple of months, which I had recently. I was advised by the radiographer to phone my Gp to obtain results in 2 weeks, however within 4 days I had received a letter last week from my Gp requesting me to make an appointment...... the earliest one available is tomorrow. As you can imagine I have been fraught with worry and I have been unable to obtain an earlier appointment, the pain is persistent ache, not caused by any activity and is present even before I get out of bed in the morning. Sorry i neeed to get that off my chest, tomorrow can't come soon enough. I wonder what monitoring of treatment is offered, I need some guidance on this, I feel that I am left monitoring my own condition which I know we all have responsibility for , but if I am some idea of what's pathway is suitable this would make me feel more in control. If I didn't go to see my Gp, I am sure that nothing would be done. I hope that somebody can help me. 🌷

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