Forum Discussion

Temple's avatar
Temple
Member
5 years ago

Arimidex - first 6 months

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.













anastrozole
arimidex
aromatase-inhibitors
new-diagnosis
side-effects
  • arpie's avatar
    arpie
    Member
    5 years ago
    @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.

  • Jwrenn's avatar
    Jwrenn
    Member
    5 years ago
    @Temple there were a lot of things I’d read about that I then worried about that haven't happened, one being having drains after surgery. I had a lumpectomy and ( I presume) that’s why I didn’t have them. My husband tells me I read too much. He’s probably right but I also want to know what I might be in for in advance. I saw my radiation oncologist last week after finishing treatment and was asking about heart problems after radiation as it was on my left breast. Wouldn’t happen for ten to fifteen years if I have any. Still didn’t allay my fears though, as a history of heart problems in the family. And my appointment with the medical oncologist is via phone so it’s harder to have a rapport with them that way. 😕
  • Temple's avatar
    Temple
    Member
    5 years ago
    @JWrenn yes sounds so familiar! One big opportunity to freak out is the time between surgery and when you commence radiation therapy. Just a whole lot of time to Google up everything because the questions you have won’t have been answered and often, they are only just emerging as questions. I stuck to reputable sites many being from the US and UK, hoping to glean a morsel of information that might have been useful to me, some of it about the most basic things.
    I was also amazed how much detailed information post radiation was about brands of moisturising cream but not about fatigue and side effects. Because everyone is different I think that’s why doctors do need to make sure we get to ask questions about us. 🧐
    I can’t see the point of further appointments with my rad oncologist because I had very standard right breast treatment and the last follow up appointment was a totally half assed discussion about diet and exercise and...why don't I join an older person’s calisthenics group? 😳😂😂😂😂 He clearly doesn’t know me.
    I felt more fat, more lazy and more demotivated than before I walked in, and gave up walking  daily because he scoffed at my efforts as sub par. 
    Nowadays, “What do I want from this appointment?” is my only perspective (its usually just info) and I do that FIRST up, so the specialist doesn’t get to rush me through or derail the appointment. And so I don’t leave without what I needed. I have brief appointments, courteous enough, and usually underwhelming. And then I get on with life. Yeah surgery👏 Yeah radiation👏 Yeah anastrazole👏 These specialists are not part of my real recovery. They just don’t know it. My sense of equilibrium and wellbeing is what I’ve done for myself. Maybe that is as it should be, but there is a lengthy mythology about their role in care that was never true for me. 
    Again I’m so glad this hasn’t been a common experience for people. And good care is out there!