Yes for the first month I had a least two really intense hot flushes every hour accompanied by a thumping heart which was scary and sent me to the GP surgery for a thankfully normal ECG. Nightimes were thankfully normally ok with a couple of exceptions. It was nothing at all like I had experienced during menopause - it was like menopause on speed .
After a few weeks they settled to a level that I could manage them and the thumping heart thing went but at the end of Summer when it was humid I spent whole evenings dripping with sweat . If it had just been this I could have continued though but the joint pain and hair loss and concern about my underlying health plus the very small predicted benefit made me decide to stop . Xx
I Han on my second try at these drugs , extremes, after refusing to go on with lexastrole. Of course, no different and the low mood even took me to suicidal thoughts. Iāve decided to take my chances. Am 73 and want my life back again. Had a mastectomy with large tumour this time last year. But donāt want my quality of life to be so appalling. Hard choice, eh? Xx
I actually donāt think itās that hard a choice as I was feeling truly miserable. It wasnāt ājust having cancerā as that journey started in January. As soon as I started Letrozole in February pre op my mood went downhill. No joy at all, not even for my 4 month old grandpup. I thought my family would be better off without me, firstly thought of leaving home & disappearing before contemplating suicide. My hands were virtually unusable and I couldnāt sew, craft or even open a bottle. Sore joints all the time but you canāt take painkillers every day.
Iād rather be living my life fully for less time than living a half life in the shadows taking these tablets for 5 years with possible lasting side effects.
But everyoneās side effects are different and Iād still recommend people try them as very few get the intensity of side effects I did.
I have a 10% improvement in survival after 10 years from letrozole. Itās higher than I had for chemo. That cannot be easily ignored so Iām really hoping itās bearable.
I am wanting to have my life back again and the low mood has been incredibly difficult. Not easy to balance the difference between the right things to keep the health going, against quality of life. I think Iām ready to take my chances against my low low mood.
Some people donāt have this, it seems, so they are the lucky ones and should of course, continue.
I am 4 months on Letrozole and can no longer cope. My fingers are sore and are about to break or dislocate, my whole back is hurting, and my shoulders and knees are sore. I am going to request exemestane and hope it will get better. I am also going to ask the doctor Duloxetine 20 mg as it is supposed to help with back pain. I feel that my body is broken and I am getting very depressed.
So sorry to hear this. I had surgery in early March and havent started the Letrozole, so far. I will try it but if it causes pain and discomfort iāll stop it. My quality of life is more important to me. I first will try every other day. Check your detox for liver. it will likely help a bit
Ask if you can have a break between the two or it might be difficult working out what is causing what . Usually they will be happy for you to have a break of about 6 weeks. I did stop but my benefit was tiny and my Surgeon said from the outset that it would be reasonable for me to stop . My friend like you did not tolerate Letrozole was allowed a break and went on Exemestane and has been on it for nearly 4 years now .
Iām very much hoping that you feel better soon. Xx
I know youāre not asking me but I just take supermarket own brand.
And glucosamine & chondroitin Iāve taken for years, collagen Iāve taken for a year and now tumeric as Iām determined to restore my joints now Iām off the tablets. It didnāt help I had to stop taking them pre op.
Iāve been taking letrozole for about 5 or 6 weeks and ache like mad in the mornings. It is similar to having polymyalgia rheumatica which Iād just got over the week I started Letrozole. Iāve emailed my surgeon as Iād like to take a break and transition to Tamoxifen, which I tolerated quite well in 2003 when I first had BC. At least that leaves you with oestrogen to take care of joints etc and locks onto the part which feeds any bc cells. At 77 and a half, I want to be able to move freelyā¦and not be a crippled old lady before my time! I do walk and some pilates but itās the first thing in the morning which is a real buggeration! Good luck everyone. Itās a tough choice but at my age I feel itās quality over quantity when it comes to living well.
I feel so sad reading these posts. So much is a reflection of my own journey. I used to be so fit before BC but I feel that the treatment stole that from me.
Iāve had the fear and uncertainty, Iāve battled the side effects. Iāve taken the supplements. Tried to believe that I could rise above just given time. Iāve had the conversations and felt unheard by both clinicians and friends who just donāt get it because itās not happening to them.
Unfortunately everyoneās journey and risk profile is different. This makes offering advice tricky.
What I will say is that itās worth doing your own research. Anastrazole did give me suicidal thoughts and Letrazole did give me tendinitis despite clinical staff brushing off the symptoms as just menopausal.
Iām six years out now. I had full mastectomy, chemo, rads ,Tamoxifen and every AI going because I was scared but eventually I decided to stop it all and āLIVE UNTIL I DIE!ā In fact Iām even taking prescribed Tesosterone ( BC menopause specialist doctor) now which has really helped my moods, motivation, sleep, ability to cope and quality of life. Thereās a chance Iāll get BC back but my risk for heart disease, osteoporosis and dementia is reduced and whilst Iām alive Iām enjoying my remaining life again. There are research studies to say that Testosterone is actually BC protective.
Itās your life so do whatās right for you. I feel total empathy and wish you all well in your BC journeys what ever you decide.
@nell5 have you asked what your risk of recurrence is? From that, what percentage benefit do taking AIās give you?
So for example if your risk of recurrence is 5% and AIās give you a 10% benefit that only reduces your risk to 4.5% which you need decide isnāt enough for quality of life.
In my case my risk of recurrences one to two percent and when I did the NHS Predict Test the benefit of me taking Tamoxifen gave me a 0.1% improvement so no way was I going to risk it!
Thereās a newer version now which you can run your numbers through Predict Breast
Itās not as simple as saying try it you might get on ok with it because there are risks to taking it and risks to not taking it. For example some of the side effects from AIās are irreversible like damage to eyesight or teeth for example.
I decided to stay on HRT instead and live my life. Donāt count the days but make the days count! Thereās a group on FB HRT After Breast Cancer for anyone interested
Iāve stopped taking it a couple of months ago was getting hot sweats low mood and bad anxiety they have given me a different one to try but havenāt started it yet
Agree. I feel the same. I havent started Letrozole yet and dont want my bones affected. will try but am planning every other day to help my body detox. I am finding it hard without drugs let alone with them. I am looking around also for alternative to back up if I have problems.
Two of my friends took letrozole for over a year, and felt dreadful. One just stopped taking it, and the other tried different medication.
I am very sensitive to medication and decided to get over the mastectomy first before I embarked on the letrozole. I was told it would only make a 2 percent difference, so I decided I would rather feel as well as possible for as long as possible, and have not taken it. This may not help you at all, but you may need to know what other women are doing, to give you some chance of gauging whether you want to keep taking it. The specialist should be able to advise whether it is vital for you to take it, or just advisable.
These comments have all made me feel human again, and reinforced my opinion that I donāt want to live this way for the time left. Thank you so, so much .
Youāll never know what itās meant time. Good luck everyone!
It is clear from these comments that we all have different reactions to these drugs and for some the effects are tolerable if difficult for others like me they were intolerable and life diminishing. I made the choice of quality of life and only time will tell how that works out. There is no right answer just love and support and do what is right for you.
