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Quitting Anastrozole

19 REPLIES 19
Kate1234
Member

Re: Quitting Anastrozole

Thank you for your detailed reply. I am probably going to follow that same path... Choosing quality of life, and hopefully getting a long life too.  I hope you enjoy every day! 💙

Braveface
Member

Re: Quitting Anastrozole

Dear Kate1234,

Exemestane was no better for me ... the side effects that had accompanied Anastrozole returned with the Exemestane.  I recall trying the Exemestane for a 5-week period - this was back in the summer of 2019.  I decided to take neither drug from that point forward.  It was scary, and it still is.  I had taken the Anastrazole for two-and-a-half years roughly, and I really hope that will have been enough to see me through a couple more decades.  I am 66 now.  I feel healthy.

No, I do not see my oncologist.  Not from choice ... the breast cancer treatment system where I live in Canada sends you back to your GP after two years of clear follow-ups with your oncologist, and requires your GP to conduct the follow up exams after the 2-year mark.  My GP knows that I quit the Anastrazole when I did, and he did not scold me about my decision.  When I have reached my 5-year anniversary since the onset of my breast cancer (which will be Dec. of this year) I am to see the Breast Cancer Care team again for a big 5-year follow up with them.  I hope they do not try to scare me into taking Anastrazole again.

If you are wondering how I made my decision to quit Anastrazole, it was like this, and please forgive me if this sounds harsh:  I choose to die at an earlier age without taking the drug, rather than gain the extra years that taking the drug might give me.  The miserable existence that I was having with Anastrazole?  I would be wasting the chance to feel good in my 60’s for the opportunity to maybe live some extra years (in my 80’s?) if I continued taking Anastrazole.  I choose now to feel healthy.

Sorry, this has been a long message. As I said, it is still scary ... I found a lump under my arm a couple of weeks ago and of course I thought my cancer had returned.  I had everything checked out by my doctor and I’m fine - it was just a swollen lymph node from my COVID-19 vaccination.  Oh, and I still get hot flushes/flashes!  But they are slowly becoming less frequent (maybe only 6 in a 24-hour period) and far less intense.

Good luck with your decision-making.  I know how difficult and scary it is.  My very best wishes to you ❤️

 

Kate1234
Member

Re: Quitting Anastrozole

How did Exemestane end up working for you?   I stopped Anastrazole 3 months ago after 2 years on it, but it is making me nervous that I'm not doing everything I can to stop recurrence.  

Kate1234
Member

Re: Quitting Anastrozole

I'm like you!   I stopped Anastrazole 3 months ago after being on it for 2 years.  I feel SO much better.  No more hot flashes!!!  No more joint aches!!!   I really don't want to go back on it but feel like I should go back to my Medical Oncologist and let them try to convince me it's worth it.    Did you keep on seeing your Medical Oncologist even though you stopped Anastrazole?  What have you learned since you stopped taking it?  Thanks!

Braveface
Member

Re: Quitting Anastrozole

Hi Getorade, 

Wow, I really admire your conviction.  Best wishes to you and a toast to healthy living!  Quitting is such a hard decision.  I hope that you are feeling ‘normal’ again quickly.

HUGS from Braveface 

Braveface
Member

Re: Quitting Anastrozole

Sorry Getorade, above message was for Wavylocks 🤪

Braveface
Member

Re: Quitting Anastrozole

Hi Getorade,

Sounds like taking it a year at a time is a good idea.  Maybe during that time the drug developers will be able to make improvements on their products.  Thanks for reaching out to me ... it’s always nice to know you’re not alone.  🤗 HUGS

Braveface

waveylocks
Member

Re: Quitting Anastrozole

Hi Braveface.

Sending u big hugs! I was also stage 3 too, grade 3, HER2+ so my onc wants me on exemastane for 10yrs. Am currently at 4yrs 5 months....not that I'm counting. Haha! I completely understand. I was hoping to stop at 5yrs. Im constantly tired, stiff and have no get up and go. Am desperate for energy! Other extra se's have crept in like bladder incontinence first thing...very embarrassing! Appalling memory & my concentration isn't great either. 

My Onc put the scares on me as am told my bc was " particularly nasty". (Nearly wrote tasty!!  🤣

The problem is the research is mixed and he admitted to me that there isn't any specific research showing which types/stages/grades of bc benefit from longer hormone therapy. So though the overall benefit is only 1% it could be much higher for the types of bc I have. No one knows. He said there is talk of making it life long! (OMG no way!) So I feel in a quandary. I dont want the bone breakages that come around year 8! On the other hand I dont want to be kicking myself cos I stopped treatment  sooner. So we've agreed a year by year review. Been referred for for a dexa scan. Am disappointed as was looking forward to finishing & hopefully feeling better! Hey ho! 

 

So it's a difficult decision & am sorry I dont think I've helped u at all. Except to say your not alone! Big hugs xx 

Getorade
Member

Re: Quitting Anastrozole

I've just stopped taking Anastrozole 2 days ago. I don't have an appointment with my oncologist until early October but the side effects are just unbearable. I don't intend on taking any other drug either. I also stopped taking Venaflaxine which was prescribed to me in replacement of HRT and to my surprise I am not getting hot flushes so it was just the Anastrozole causing these hot flushes. I intend on keeping my oestrogen low through diet alone. I read somewhere somebody took Anastrozole for the 5 years as recommended and after that they got a recurrance so my thoughts are, why live such a miserable life for 5 years. My cancer was only stage 1 and my breast surgeon reckoned it was caused by HRT. It was only 8mm of tissue, no lump so I'm putting it down to the HRT over the 10 years that I was taking it. I no longer take that. In my opinion, healthy eating, exercise and a good mindset is all I need. I want a good quality life. I don't have BC in my family and my family is full of Women so I'm taking my chances. When I see my oncologist in early October I'm going to explain. When I asked my oncologist at my previous appointment what happens after the 5 years of taking Anastrozole, he couldn't answer that. They only know what they are taught and nothing else. Not everybody is the same. Good luck ladies. I'm post back after my appointment. Xx

Braveface
Member

Re: Quitting Anastrozole

Will do.  I’ll keep an eye on my hair, too, and let you know if it starts thinning.  Hope not!

All the best. 🌸

Treeze
Member

Re: Quitting Anastrozole

Let me know how you get on with your new meds..Hope it helps you.x

Treeze
Member

Re: Quitting Anastrozole

How kind of you..what a lovely message! I have an appt with her in Nov but don't always see her..often a male registrar instead.I usually go and put my usual smiley face on and play it down but this time I will tell her.Usually they just nod and agreed and tell you to take it anyway! The thing that scares me with trying other meds is I'm sure some make your hair thin and I'm vain enough not to want to go through that again! I feel my body is dropping apart..have to have two of my teeth at the front taken out soon due to bone loss and wear a denture.A friend said it's like nothing happened to me for 50 years and then everything happened! I would come off and take my chances but want to stick around and see my new grandchild born☺ Thanks for taking the time to think of me and reply, it's appreciated x

Braveface
Member

Re: Quitting Anastrozole

Hi Treeze,

 

Please don’t apologize about moaning ... this is a good place to do it.  Only those who are suffering from the side effects of these drugs can really understand the pain.  Unless your oncologist has been on anastrazole herself (himself?) she or he won’t know how really bad it is.  All the ‘side effects’ info on anastrazole comes up shy on how painful it can get.  The tendons in my knees were extremely stiff, like you’ve described.  Plus, I felt like I had flu all the time.

 

I did quit anastrazole once several months ago - for 7 days - I was feeling so desperate, hopeless, and fed up.  Then I got scared and went back on it.  Following that, I scheduled an appointment with my oncologist (it took about a month to get in to see her) to tell her what was happening.  I made notes before the appointment so that I was fully prepared to describe in detail how awful I was feeling (Dr.’s like specifics).   I convinced her it was more than just ‘discomfort’ I was feeling, and that I was considering quitting the drug because I was no longer prepared to sacrifice my quality of life.  I even cried.  To my surprise, she told me to stop taking it for 6 weeks to see if I felt better without it.  At the end of the 6 weeks I would meet with her again, she would do some blood tests, and then ‘we’d see’.

 

Of course I felt better soon after I quit taking it.  I met with her after the 6 weeks was up, and it was clear to her that I was feeling better.  She then asked me if I would consider trying a different drug.  My heart sank, but I said I would.  The drug is exemestane.  When I asked her what the difference would be, she said the side effects list is much the same as anastrazole, but it has a ‘different delivery system’ and that I might tolerate it better.

 

It’s only been a couple of weeks so I can’t tell yet how it’s going to affect me, but I am hoping for the best.  It might be worthwhile for you to get in to see your oncologist and try something similar - make it crystal clear to her or him that you are in daily excruciating pain and that you are considering quitting the anastrazole.  She/he won’t want you to do that, and might offer a different drug in its place (maybe even a ‘break’ like I had?).  You sound like a lovely person, and if you’re like me, you don’t want to complain.  But DO complain to your oncologist.  The doctors must be made to understand that the current one-size-fits-all approach with anastrazole must be improved upon.

 

A change might help you get through the rest of the five years.  As for 10 years, there’s no way I’m doing 10 years!  My cancer was only a Stage 1 so that’s easy for me to say.  

 

I hope you you get some relief soon.  My heart goes out to you. 😘

Treeze
Member

Re: Quitting Anastrozole

Brave face today I've come as close as I ever have been to quitting. Today in excruciating pain around my hip/ middle leg area which feels maybe like a pinched nerve/trauma. Not had pain like it, could have passed out trying to walk home.Pretty sure a lot of this is how I walk due to my stiff joints and pain in toes feet knees you name it. In the last year I've pulled my knee due to tight tendons and been in pain for weeks with it and countless painful hips etc.I am.on my feet all day as a cleaner.Been on anastrozole for almost 3 years and in pain daily, barely able to walk the 10 mins home from work sometimes. I was a grade 3 and also had kidney cancer.The only reason I stay on it is for my children and grandchildren..would probably have stopped if it was just me.They want me to stay on it for 10 years but not sure I will manage 5 and I'm no wimp! I feel unable to exercise as my ankles and knees feel so weak and brittle.Sorry to moan but honestly feel like I'm alwats trying to recover from one injury after another.

Braveface
Member

Re: Quitting Anastrozole

Thank you so much for your message.  I was finally able to see my oncologist again and she took me off anastrazole for 6 weeks (heaven!).  After the break she asked me if I’d be willing to try a different aromatase inhibitor - exemastane.  I’ve been on it for a few weeks now and so far so good. Fingers crossed that this drug will be better tolerated by me.  Your encouragement and kind wishes mean a lot.  My best to you, as well.

Maz10
Member

Re: Quitting Anastrozole

Hi Braveface

 

I think most people on Anastrazole will empathise with you; but try not to stress. My husband wants me to stop taking it (after 2 and a half years) because of the side effects. I think the only reason I haven’t is because he wants me too - and as a lot of us know we can get ever so slightly argumentative and difficult 😂

 

The side effects are horrendous, but perhaps try a different drug. My Oncologist actually changed mine to Anastrazole when I was having side effects with Letrozole. However everyone reacts differently to different drugs so at least give it a try. 

 

Stay strong - you’re not alone 😘

Chick1
Member

Re: Quitting Anastrozole

Hello again,

 

Thanks Braveface.  Hopefully the nurses will respond to your Post as well today.  Perhaps you can let us know how things go/your decisions after your Onco appointment.

Very Best Wishes,

Chick x

PS I just edited my previous post as I originally said you had been on Anasty for "nearly" 2 years when you have been on it for over 2 years.  Of course I just blame the Anasty for all my current mind mix ups!:

 

Braveface
Member

Re: Quitting Anastrozole

Thank you Chick 🐣.  I have read a lot of your posts and know you have been through so much.  Your kind words and support help immensely ❣️

Chick1
Member

Re: Quitting Anastrozole

Hello Braveface,

 

I just saw you posted today on the Nurses section and so am replying to that here (as I am obviously not one of the nurses - just a fellow Anasty user).   On the above Post, you sound like you are beating yourself up badly - so I thought you might appreciate a response before Monday!

 

Try and stop beating yourself up so much!  I know it is easier said than done!!  People sometimes are medically advised to have longer breaks than 7 days.  As far as I understand it, and I may be wrong,  research indicated (sorry I can not recall the actual reference for this), that suppression of oestrogen was maintained for up to six days after stopping the dose.  I understand that the half life of the drug in post menopausal women, is approx. 48 - 50 hours.

However, and it may depend on how long a person has been taking it for and other individual circumstances, the beneficial effects (as well side effects such as joint pain etc) can continue for some time after stopping.

 

So bear in mind that you have been taking it for over 2 years - so that has hopefully given you protection from such a relatively short break.  I read somewhere that it is the first few years of taking that can be the most important (trouble with me is I am good as reading things but not good at remembering the actual references!!). 

 

I just read some of your other posts and this treatment has obviously taken it's toll on you.  I think it is good that you are going to discuss it with your Onco.  Make sure they go through all the pros and cons for you as an individual.  Perhaps some of your side effects can be alleviated or maybe changing to another treatment will work for you or maybe you will feel comfortable ending the treatment after you have had a full discussion and weighed things up.

Whatever you decide just make sue it is right for you,

all the best Braveface,

Chick x

Braveface
Member

Quitting Anastrozole

Hi to you all.  This is only my 2nd post - I’m so glad I found this site.  Just reading your brave stories helps tremendously, so thank you all for sharing.  I have been on anastrazole for 2 years and 3 months, and have decided to stop taking it after very careful consideration.  My side-effects from the drug did not improve over time - they have become worse in fact.  I took my last pill 3 days ago and I expect it will take some time to get feeling better.  Can anyone tell me what side-effects they experienced when they came off anastrazole/arimidex?  For example, I am experiencing one hell of a headache since stopping, and feeling generally **bleep**ty.  If anyone can share their own experience about stopping and how they felt, I would love to hear from you.  Warmest wishes 😘