Oh these estrogen blockers.....they might be saving us all from reoccurances but they bring their own array of consequences!
I was on Letrozole for two & half plus years, no real side effect at first but as time went on I got more and more tired to the pont I could barely function. A bone density scan showed that the letrozole was stripping my bones so they recommended I changed to exemestane. So now on that for last four months.....hot flushes rule and the fatigue is a little better.
I am struggling with full time work, just cant do it anymore so come September going down to part time.
My Onc wants me on the estrogen blocker for ten years.....just about do the 5 but 10????? Arggggh! I really dont think so.....my bones will have disintegrated by then......!!
I had really bad side effects on Anastrazole but my oncologist swapped them for Exemestane and although I still have similar side effects they are much, much milder. I spoke to a nurse a few weeks ago and she said that even though they are very similar for some reason some women tolerate either one far better than the other.
If you have never tried another then it may well be worth asking your oncologist if you could swap.
Hope your feeling better soon. Xx
This is my first visit to this Forum and reading the comments is so helpful. I have been on Anastrazole for 3 years, some side effects eased after a few months such as the hot flushes, although I have gained weight its within bearable limites. What I am now really struggling with is painful bones and joints and extreme fatigue. LIke so many others on this thread I too go to bed for a rest almost every day. I am lucky enough to work from home for myself but can only manage about 4 hours a day. Some days are better than others and on a good day I feel optimistic and sure I can continue with this drug but when I get a run of bad days I feel like taking my chances with a return of cancer. My GP has suggested that I change to Letrazole but I am so unsure what to do as the side effects look just as bad if not worse, I suppose it might be worth taking the chance in the knowledge that I can always go back to Anastrozole if things do not improve. Like others on this site I am also trying to keep active with dog walking and regular Pilates classes but it is difficult and if I have a social outing say to meet friends for dinner I absolutely can't do anything else that day to give myself the energy to make it through an evening.
not that I am an expert on this subject, but have been doing some research on the subject.
I was on Letrozole for two months before my op - no side efects - and shall be on it again in the next few weeks, for the next 10 years - now post chemo and moving onto radiotherapy.
Some of the side effects may actually be due to our cancer and treatment, rather than the hormone inhibiting drugs. They may improve over time and may get worse for a while. Cancer/chemo fatigue and cancer/chemo 'brain' do not always dissappear as quickly as we may think.
Here are some links re this -
It may be worth discussing with your prescribing doctor to get his/her opinion. In some cases Anastrazole can be replaced by Letrazole. But there is no guarantee that you will not have some side effects on that either.
I was put on Anastrozole stright after Radiotherapy, was ok for a few weeks then symptoms started to creep in. Joint pain, insomnia, sickness, fatigue, hot flushes, legs like lead weights. They gave me a month off and I felt so much better. I was then put back on it, and now 6 weeks in and its dire. My hands during the night literally sieze up, i practically swim out of my bed with sweat. I constantly wake up, and then at work I am practically falling asleep. My memory is shocking too.
I have put on a bit of weight but not too much.
I had a mother of all panic attacks yesterday I got into such a state at work, I ended up going home and stright to bed. I spoke to a MacMillan nurse who said that the symptoms I am experiencing are nothing out of the ordinary and it can take up to two years for everything to settle down. I am hating my life at the moment and so trying to make things better 😞
Morning! I have been on Anastrazole for just over a week and have found that, whilst I was fine for the first couple of weeks post treatment, my legs are now feeling leaden and my thigh/calf muscles are really painful in the mornings. I walk my dog every morning, but it's quite a struggle - I get very breathless and fatigued.
i used to race the dog and swim a mile most mornings before work (pre diagnosis) but now I feel I've aged 40 years!
i take the drug at night (more likely to remember as I usually struggle to complete a10 day course of antibiotics!!) it's encouraging to read that I'm not alone in having aches and pains (and it seems mine are not nearly as severe as some) and feel the need to have a nap in the afternoon.
however, I naively hoped that, now the treatment is (almost) over (I still have minor surgery and radiotherapy to go through) I would return to high energy levels.
Thanks for the question Penny - I am now armed with an appropriate response when my beloved asks why I'm reluctant to tackle the weeds/housework!!
feistyflora, I too have been on anastrozole for nearly two years. While I am not 'buzzing with energy', I don't think I have had side effects I can ascribe to the drug, except maybe the slight rise in cholesterol I was told about a couple of days ago (which the GP did not mention as a side effect). I do have a number of other minor problems, but all of them have a pre-existing cause or a more likely explanation.
I am not suggesting that the people who are having debilitating or difficult side effects are misplacing the blame - too many talk of similar symptoms for that to be likely. I do wonder how many are on Anastrozole around the UK? We do need to remember that a forum like this is going to get more posts from people having problems than those of us not having problems - in fact, many of us in the last group visit only occasionally or not at all, part of putting the treatment mindset behind us and trying to move on. That said, knowing a forum dedicated to our support is available is reassuring.
Oh dear, I feel awful admitting this but I've been on Anastrozole for two years now and I'm buzzing with energy most of the time, in fact my other half tells me to stop rushing about so much! I have noticed that I start to tire a bit more towards evening though so now I go to bed a bit earlier than I used to. I asked a pharmacist what was the best time to take the Anastrozole and she said that it doesn't matter whether you take your tablet in the morning or the evening, the important thing is to take it at a regular time to keep the therapeutic level constant. Just for the record I take my tablet at 8 a.m. each day.
Not a nice tablet at all. Likewise, I have very little energy, joints horrific, ache and generally feel crap. I take mine bedtime, that's another issue, wish I could get some sleep. Feel bad to moan but on a bad day I could cry and cry. Great to talk though, let's stay strong lol xxxxxxx
Penny Im on Letrozole & I take mine before bed. I tire really easily too & like you my heart was affected by treatment but seems pretty stable on meds. Never really know what makes the difference. I do try to walk but fund my energy is finate & one thing rules another out.
So these days if I have a busy day doing more active stuff like gardening or cleaning I skip the walk. I walk on inactive days. Seems to work better. Still really annoying though! Shortly starting with a personal trainer who specialises in cancer patients so hoping he will be able to give me some top tips on how to improve. (Part of the Macmillan get active project) xx
I finally went to see GP after my symptoms got worse. He recommended having a break from the tablets. Then he astounded me by prescibing Arimidex (the patented version) at my request- that's the one that costs over £60 per tablet. I came off the tablets for a week and it was lovely-to my surprise I even slept better at night. I had lots of energy and didn't have to nap at all. It was a sudden and brief improvement. Then I went on the Arimidex and this is week 3. I found I was getting tired but this was at a later time pf day, and less disabling than before. I tried taking it earlier in the evening and this was more successful. Out of respect for the NHS I will try the generic Anastrozole tablets I have left earlier in the evening to see if I can minimize the nasty side effects. If this is successful I will stay on the cheaper tablets. Meanwhile I wonder if taking it earlier in the day affects its effectiveness- does anyone know? I will ask the ONC who I am due to see next month.
Been on anastrozole for a year now n doesn't get any better, tried another tablet for a couple of months and that was even worse. So resorted back to the better the devil you know ha ha.
Along with the hot flushes and insomnia comes the aches and pains, and feeling ten years older.
Back at work now doing 24 hrs and good part of that is on my feet, so that's not good and the only place I go after is my trusty sofa as no inthusiasm for anything else.
Not sure if there is an answer but will ask what else is available at my next review.
have a great day ladies
Does anyone know what causes fatigue on Anastrazole? I have tried to keep to one manufacturer's product each time my prescription has been renewed, and I am getting regular rest, but I can still only manage to work 4-5 hours a day. (That's on a good day) I have become a Lady who Naps. Even after that I fall asleep in front of the telly. I feel as if I knew what was causing this I could take steps to prevent it.
I'm also on heart meds for chemo-related heart damage, but they don't seem to make a lot of difference. If I forget to take anastrazole I have a better day. If I forget to take the others I just have a naff day with my heart symptoms starting to come back.