Hi , there is apparently a shortage of Letrozole again! I’ve been on Accord since May , every side effect listed but managing to cope / counteract them , but last script they gave me Sun despite my Gp specifying Accord , but they didn’t have any . Well the difference!!!! Horrid night sweats, hot flushes with a vengeance , itchy scalp , more bone pain and this massive dark cloud and that’s after only 3 days!! I’ve managed to get one box of Accord but dread to think how I would cope on the Sun brand! It’s hard enough dealing with having cancer without this hassle ! Sorry for ranting 

Hi can't sleep, and just popped on the chst forum and saw your reply...thank you. 

Yes cancer is the gift that keeps on giving, I never realised that the after treatments would make you feel so rotten, they don't knform you of all the side effects you get whike taking letrazole.  It's hard at times,, and I was shocked to be told by my oncologist ( that I've never met I. Person,that I'd be on it for 10 yrs,I've 7 more to go. But it is whst it is and you just have to make the most of life,and do what you can do ,and try not to worry that you can't do whst you used to do. We are not brave ,lije everyone seems to think we are,we have no choice. We do what ever we're told to survive .Some days  are better than others are,  and im just grateful I'm.still here.

Im the same. The Sun Pharmaceutical is ok but the Accord is almost impossible to live with. Yes Im happy to get on with it and glad to be here. It doesnt need to be this hard. To get it right saves everyone time and money. Its interesting though that people manage on Sun while other Accord. It would be useful to be able to specify brand. It would mean not having to pester the GP.

Hi yes totaly agree,it's so hard at times my joint pain is  really bad today ,the colder weather doesn't help ,some dsys are worse than others. But hey ho we're still here,and I keep telling myself this when I get bad dsys like today. Anyway it will be Christmas in a few weeks time so I'm wishing yoi and everyone on this chat forum a very happy merry Christmas,. 

Oh yes someone has mentioned it before,and I'd completely forgot about that.  Letrazole does that to Mr lol,I don't remember things like I used to at times. Thanks for the reminder  I'll ask my doctors,we'll the nurse as I'm having a blood  test ,as part of a lmedication  review, which was soposed to have been done in June this year, my gp receptionist  called me and said you need a blood test first  and then a appointment with our pharmacist. So I'll ask about it  speak to the nurse , who may know or ask my gp about it . Thank you .

By chance I read an article in a recent Saga magazine, quote; “Vit D & Magnesium. When using calcium and Vit D to boost bone health, you should also take a magnesium supplement (obtaining enough magnesium through diet alone is difficult because modern farming methods strip soil of this mineral.) The enzymes that metabolise vitamin D require magnesium to activate the vitamin, says a study in the journal of the American osteopathic Association. The NHS states it’s safe to take up to 400 MG of magnesium per day, with magnesium citrate having one of the best absorption rates. When you take it is important. Minerals compete against each other for absorption if taken together, so have calcium in the morning and magnesium at night as it can help you sleep, suggests Al Ali. Don’t take minerals with tea or coffee as tannin can reduce their uptake. End quote

What attracted me, apart from the calcium uptake, was the hope of a better night’s sleep. Can’t say this has happened. BUT!  Since 6 Nov when I started taking it at night, there has been a marked improvement in my general aches & pains. I no longer have to get up from an armchair and stand for a few seconds to “get things moving”. 

i did ask my oncologist if it was ok to take this and he said yes. Well worth a try in my opinion. 

Hi All,

I took Tamoxifen for a year, but then developed a second cancer. At that point I changed to Letrozole and took this for 6½ years. I had problems with my emotions when taking Tamoxifen. These were accompanied by insomnia and terrible sweats. When I changed to Letrozole, I had the same problems as described above, with  various makes in short supply. I found that Femara was the best trade mark for me. I still had most of the side-effects mentioned in the literature. I developed cataracts in both eyes. I had complications with posterior capsule opacity, 2 years after surgery and lost the sight in one eye completely. After other complications and 5 eye operations, I was fortunate enough to have my sight restored to 20/20 vision.

The change to Letrozole improved my emotional state, but caused havoc with all of my joints. My finger joints swelled up and I retained more bodily fluid throughout. I had a lot of problems in particular with both knees and had to have them both replaced. I developed back problems and have had difficulty with standing ever since. My hair was fortunately thick at the outset, but it started to fall out. I gained 5 stone in weight and didn't lose this, until I had stopped taking these tablets. I still had the sweats, but developed a dry mouth and nasal passages. My skin became very dry and my scalp became intensely itchy. My nails developed vertical lines, became dull and lifeless and prone to splitting frequently. My concentration and memory also suffered. I was first diagnosed 14 years ago and stopped taking Letrozole in July 2017. 

The very fact that I have had no further recurrences of cancer for the past 14 years, has made all of the side-effects worthwhile and, despite these, I would have no hesitation in taking them over again, if I had another recurrence.

I wasn't informed of the side-effects before I started taking these tablets and it wasn't until I read the accompanying advice leaflets, that I discovered that all of these symptoms were attached to taking hormone therapies. Few of us are ever the same as we used to be, prior to diagnosis, but we're still here and we only get one chance at life and have to make the most of it.

Kind regards,

Jolamine xx

I had a long conversation with my surgeon two weeks ago, as I have seen other people on past appointments. He listened and took notice of what I had to say. I asked that much more is done to inform people of the side effects of these medications and that I really did feel I went through it all on my own due to the pandemic. He apologised and said that he agreed with all I put to him. He advised me to call the breast care nurses in future should I develop any other symptoms, not many on the list we all haven’t got I think!! My point was that being informed would prepare us for what might or hopefully might not be, but that feeling of is this only me it’s happening to, also allowing the changes to impact so massively on our quality of life may be alleviated by a change of meds! It really is worth speaking to someone about changing to see if it eases the side effects as we are all different and respond differently. I was told as they all come under the same family of meds I might be better, worse or the same! I am definitely better than I was on anastrozole, by no means up to running a marathon but coping better day to day. I couldn’t have carried on with anastrosole much longer. I’m here and I’m making the most of what it throws at me. Seen a physio about my hands to which the surgeon did say meds have caused the arthritis but do my exercises and keep taking the tablets!!

Take care all.

Jolamine reading your reply about all your side effects whike taking letrazole  is also spot on for me.  I've bee. In letrazole for three years  and have another seven years of taking it. I have my first review of my medixarukm witj a pharmacist at my GPS tomorrow,it should of took place in June  thier so behind.  But I agree with you, the fact that I'm still here to me is so worth all the side effects you get,although thier not pleasing is so worth it. Like you I had no idea of all the symptoms abd side effects  I certainly thought adrer my lumpectomy, radiotherapy  that, after I'd fully recovered from thiar,thst I'd  get back go being me again. But I guess you necer really do. My eye site is weird at tge moment, I feel like I've got bits on my eyes ,I really need to get my eyes tested  , I do wear glasses but just for reading. I'll try and get my eyes tested in the new year sometime. I onky just realised letrazole can affect your eyes.  Merry Christmas  to you, and wishing you a healthy happy 2024.