Anastrozole

Hi , sorry you’re having such a grim time from the ‘nasty tabs’/ anastrozole. Some people seem to escape with no side effects at all but I can’t say that for myself. My main issue is fatigue and in the end I retired earlier than planned as I just couldn’t cope with work, even though I was only doing alternate days. I was lucky that I could do that though and of course it’s not available to all by any means. And I’m older than many here so was approaching retirement in a few years anyway. 

My ‘go to’ is getting out walking, somehow once I’m out I can walk for miles and it definitely clears my head and lifts my spirits. But again I’m lucky that I’m not working and both my kids are grown up, so I can please myself!

I wonder if you should discuss changing to a different hormone buster? I’ve got friends who are a similar age to me (I’m 62) but take tamoxifen because of other health issues. And others are on letrozole. There’s also exemestane (think that’s right). Just a thought. I totally sympathise as it’s so true that everyone else thinks it’s all done and dusted once ‘active treatment’ is finished whereas these tiny pills have huge and ongoing effects on our lives. The other effect that drives me mad is the brain fog, which is now recognised as a side effect from the lack of oestrogen. 

Not sure that any of this will be much help but you are absolutely not alone! Love and hugs, HFxx 

Hi

Thank you it helps to share. I am reluctant to change and have to start again on something else which might be worse. Talked to chemist yesterday he said it can take 6 months min to get side effects to settle. The breathlessness is the worst.

I have to get used to this life as the alternative would probably have meant death so on that basis you just have to keep trying don't you.

Thankyou

Helen

Hi Helen2021

So sorry to hear how you are feeling like this due to taking the Anastrozole.  I also struggle with taking any hormone-blocker.  I've had Tamoxifen and Anastrozole several years ago but it was, for me, intolerable, especially as my risk benefit was calculated to be just 2%.  I decided, after discussing with Breast Care nurse, to stop taking it, that time. 

I've had breast cancer again this year, other boob, lumpectomy, SLNB (2 nodes, clear), followed by radiotherapy.  Again, hormone-blockers, this time Letrozole but, again, effects difficult to tolerate and, again, 2% risk benefit.  Consequently, the BCN suggest a 6 week break and discuss with her again then.  I feel quality of life is more important, to me, than quantity

One thing I suggest you try is to change the brand you have been having to see if a different brand is better for you.  Unfortunately, lowering of oestrogen may still have some effects but the fillers, colourants and/or the coating, different between manufactures, can make a significant difference.  Every one is different, though.

What I did, to be able to change brand, was to order the hormone-blocker at a different time from other meds, so it's on it's own script.  You can then take the script to any pharmacy and choose the one who has the brand you wish to try, in stock. 

Wishing you the best of luck

Hi

I am about to start on anastrozole and would welcome any input. I too have lymphodema on my abdomen and struggle to conceal it. It’s bad enough having had a mastectomy but now my body is just a mess. I am struggling with the decision about whether or not to have chemo but this hormone therapy sounds like a long haul of debilitating side effects that will impact my life going forward. 
Anyway stay safe and well and sending hugs xxx

Hi Casput

I'm sorry your in a position of deciding to have chemo or not.  I've not had chemo so I can't comment. 

However, regarding taking hormone-blockers, everyone is so different.  Apparently, only about 25% of people taking hormone blockers have significant side effects.  It's us, largely, that post on here about the side effects, so it does rather skew the perception, suggesting that almost everyone will have side effects.  In fact, that's not the case at all.

You may well be one who can take hormone  blockers and be free of side effects.  If so, I'll be jealous   I feel it's worth a try with the tablets (also refered to as 'oral chemo', I believe) as you may be one of the 'lucky' ones 

Hi I was scared when they started me on it. It has been a bit of a trial but not as bad as chemo by any means. I think I made the mistake of thinking I had done 2 ops so the worst was over and i think those surrounding me thought so.

However, the emotional side and the effects of the drugs knocked me sideways at first. I was not going to have any side effects. Ha well that was definitely wishful thinking.

I have struggled a lot but finally I think I might have worked it out. You really do have to listen to your body. Before all thus I regularly did 18 hour days I would push and push myself all the time. Now I cannot do that I can be sitting at my desk and my eyes will close and I struggle and have to stop for an hour which is normally two!!!!

It's early days but I have now regulated what I do, stopping frequently and I do feel better.

Dont get me wrong restless legs is a pain, but someone said eat a banana before bed. So I am trying that.

Fatigue is hovering to take me out but if I keep to my regime I am just ahead if it.

Mood swings I will be honest really struggling with these. Just been prescribed citilophram so will see how it goes. Takes a while for that to work. 

I don't want to change to another drug cos you just have to start again with different side effects.

I know some people who have sailed thru with no problems you might be one of those. 

Please don't be put off by what you read, we are all different, you must try them, if they are recommend by the consultant you have to trust their judgement.

Most of my posts on here are when I am really low and I turn to here to draw strength from everyone on here.

I find this forum a life saver.

Please draw on us to help you thru, I am not much in front of you and having someone to chat to and share with helps so much.

You and I both understand those around us at home and work say the right things but don't really understand.unless they have been where we are now. 

The folks on here are so good.

Lots and lots of hugs

Helen

Hi, I totally agree. I don't think I am badly off really in the grand scheme of it. It's just my posts are usually when I am really down. Do not want to put anyone off.

Thank you all for being there

Helen

Hi @Helen2021 and Casput  (Sorry Helen, don't think you were tagged, for some reason)

Re fatigue, have you heard of the 'Spoons Theory'?  It's very interesting and a good way to explain how fatigue affects you to friends, rels etc

The ~Spoon Theory - https://creakyjoints.org.au/living-with-arthritis/how-the-spoon-theory-helps-me-explain-the-fatigue-of-chronic-illness/

There are other articles saying the same thing if you google it.  Hope you find it helpful

So so sorry to hear your story.it is difficult I sympathise with you this medication Anastrozole is not nice,I have been taking this for 2 months feel terrible aches pains,low in mood can’t sleep thlist is like everyone else’s endless the brand previous to the on I’m taking now is the better one, but this brand omg it’s not good nearly finished this months and picked up meds today a completely different brand again can’t cope,ay way I have an appointment with oncologist in 2 weeks to discuss this ,just want a life were I’m not in pain if it’s not too much to ask believe me I pray .keep strong all of you

Boobee
I found a way to make sure I got the same brand (assuming availability) was to order the Hormone-blocker at a separate time from any other meds.  This way, it will be on it's own prescription.  You can then check with pharmacies as to which they have in stock.  Once you find one you can tolerate, or at least the best one for you, you could ask your regular pharmacy if they could get it for you, or ask your GP to specify the brand on the prescription.  Remember, though, the GPs are unlikely to specify the Branded one, as they will be very expensive, unless that is the only one you can tolerate and then it would be false economy to stop you having it, of course.  Might be a bit of a battle, to get one of the expensive ones.

Wishing you all the  best of luck