I was terrified of this drug and the side effects and I even posted on here looking for support and info back in Jan. (The tone police intervened and I have stayed away from this site since because I was too scared to come back.Despite this, I am checking in one last time before I delete my account, in case it is of benefit to anyone newly diagnosed (like I was at the time, truly traumatised and then told I will be starting anastrazole). I want to share that my news is positive in relation to anastrazole.I don’t have any joint or muscle issues, pain, soreness, stiffness, whatsoever (which were my biggest fears). I have a few hot flushes in the evening and a bit of insomnia. I think my hair and skin is more dry and I need to use more leave in hair treatment now. My weight gain is entirely explained by what I have been eating during lockdown and not so much the drug! From the long list of worrying side effects you will doubtless end up reading, I have experienced enone that are ruinous. (I know I will have to monitor bone density.) Maybe things will change over time but I do remember I felt desperate to know or get some reassurance from someone about what the first few months would be like on an AI and was there an actual chance I would not get the worst effects?I hope this account may help someone facing anastrazole for the first time and knowing that it can be okay. Yes I could do without the hot flushes and longer term risk to my bones, but it’s not as bad as I imagined in my head, terrified and newly diagnosed, with little info to go on, or not the info I perceived as useful to me while having a very cold and underwhelming oncologist. I hope others will get the info that they need, here or elsewhere, and feel confident to speak the truth and advocate for what they need.

That’s great to hear @Temple. I also am not having any problems with Anastrozole however I am beating myself up worrying about trusting my instincts and not having drugs for bone density and taking a chance it will be ok. Too much time in lockdown mind going in over drive.All the extra food was good tho 😂😂

Hi @Temple, Iit's great to hear that you're managing the anastrazole. When I started AI's, Letrozole to start with, later exemestane, I balanced my fear of side effects with my fear of what could happen if I took nothing. That was the fear that won out. Four + years down the track, I have some side effects, but I manage them, and they're tolerable. But here I am, and life is good. Thanks for sharing your experience to date. I'm sure that in staring this thread, there will be those who come after, searching for information who will benefit.On the other hand, It sounds like you had a poor/rough/bad (pick the most appropriate word) experience with your previous post. I'm really sorry to hear that. I hope we do better this time aroundTake care

Thanks for that. I’ve read from people with all the bad side effects, and it’s reassuring to hear that someone personally is doing ok. I’m just about to start radiation, and have the AI prospect after that.

Hi @Jwrenni was similarly so keen to know what would happen as soon as I took it. And nothing did change (eg joint and muscle pain) from Day 1 and I am so fortunate knowing that debilitating pain can happen.The overwhelming aloneness I felt and lack of direct information from my oncologist esp about AI, (very dismissive) led me to panic. The day before I started the tablets, I bought a small diary to write daily symptoms/side effects down have but never had cause to write in it. I even changed our home renovation and furniture choices as a result of my fears. (Home Renovating with cancer is a another story.) While I don’t need the shower design and level floors and auto moving furniture now, maybe I will in years to come but prob wasn’t needed just yet! 🤷♀️🤑🤪(I hope you stay well and confident, and your oncologist warms up💁♀️)

@Temple - have you considered changing your Oncologist? I think it is very important to have faith in your Onc & be able to put any questions to them without feeling belittled or not believed! If their 'patient style' doesn't suit you, you could consider changing Oncs - as you will be seeing them on & off for the next few years. My first Onc was VERY dismissive and when I told him of my severe side effects on Letrozole after just a few weeks - he basically denied that side effects even happen! We all know the truth of that now tho! You are so lucky that you've not had many/any.I even felt that he was annoyed at having to spend time with me & that I wasn't sick enough to warrant his time ..... so I swapped to a lovely lady Onc in the same hospital and have been happy with her ever since. I see her again on Tues.

Arimidex - first 6 months | Online Network

Zoffiel
Member
5 years ago
Thanks @Temple I think it is really helpful to hear that these treatments are bearable.
I really struggled with Letrazole and Anastrazole, but am tolerating Exemestane. Like you, I know I'm taking it, there are side effects, but in balance it's worth the bit of discomfort if it's going to keep a lid on my disease.
It's worth giving these things a go. Not everyone cops all the misery and there is only one way to find out how it will affect you personally. Mxx
Afraser
Member
5 years ago
That’s good news, @Temple, thanks for sharing it with others. Best wishes.
arpie
Member
5 years ago
That’s great @Temple, and much better than you were anticipating. I am on Arimidex now too after bad experiences with Letrozole and exemestane. 12 months now and very pleased with how it is going even tho still some side effects but nothing too nasty.

Take care and all the best xx
Adri
Member
5 years ago
That’s great to hear @Temple. I also am not having any problems with Anastrozole however I am beating myself up worrying about trusting my instincts and not having drugs for bone density and taking a chance it will be ok. Too much time in lockdown mind going in over drive.
All the extra food was good tho 😂😂
lrb_03
Member
5 years ago
Hi @Temple, Iit's great to hear that you're managing the anastrazole. When I started AI's, Letrozole to start with, later exemestane, I balanced my fear of side effects with my fear of what could happen if I took nothing. That was the fear that won out. Four + years down the track, I have some side effects, but I manage them, and they're tolerable. But here I am, and life is good. Thanks for sharing your experience to date. I'm sure that in staring this thread, there will be those who come after, searching for information who will benefit.

On the other hand, It sounds like you had a poor/rough/bad (pick the most appropriate word) experience with your previous post. I'm really sorry to hear that. I hope we do better this time around
Take care
Sister
Member
5 years ago
I think that it's great to hear when people are tolerating the AIs well. It's important to see that there is a range of reactions to them so that others don't become too scared to try. None of us would be on it if we didn't see that it's necessary.

I'm sorry that you had such a negative experience with your previous post @temple but really glad that you are finding the AIs okay.
Jwrenn
Member
5 years ago
Thanks @Temple for your post on the fear of side effects. I had that fear too and have only just started taking Anastrozole 10 days ago. So far so good , I’m not sure if side effects come on immediately or are still to come? I occasionally have hot flushes even before bc diagnosis so that’s no biggie. I didn’t get a warm and fuzzy feeling with the oncologist but put it down to seeing her at the beginning of COVID-19 and she was just as scared of what could happen as we are. But maybe it was just her normal self.
Best wishes xx
Leia
Member
5 years ago
Thanks for that. I’ve read from people with all the bad side effects, and it’s reassuring to hear that someone personally is doing ok. I’m just about to start radiation, and have the AI prospect after that.
Belinda70
Member
5 years ago
hi leia - i had radiotherapy last year and now on anastrazole - if u want to chat about anything in relation to either lrt me know :)
Temple
Member
5 years ago
Hi @Jwrenn
i was similarly so keen to know what would happen as soon as I took it. And nothing did change (eg joint and muscle pain) from Day 1 and I am so fortunate knowing that debilitating pain can happen.

The overwhelming aloneness I felt and lack of direct information from my oncologist esp about AI, (very dismissive) led me to panic.

The day before I started the tablets, I bought a small diary to write daily symptoms/side effects down have but never had cause to write in it.

I even changed our home renovation and furniture choices as a result of my fears. (Home Renovating with cancer is a another story.) While I don’t need the shower design and level floors and auto moving furniture now, maybe I will in years to come but prob wasn’t needed just yet! 🤷‍♀️🤑🤪

(I hope you stay well and confident, and your oncologist warms up💁‍♀️)