I’ve been on Anastrozole for 4.5 years now and have had the usual (and some unusual) side effects: crippling joint pain, insomnia, mood swings, swollen feet, scaly skin, hot flashes, hair loss to name a few.
For the last four years I’d argue with my onco saying these symptoms we’re from the pill, he’d say “no, cannot be”.
Was I surprised at my appointment yesterday when he said " oh yes, those are all side effects of the pill"!!!
I don’t know what changed his mind (maybe my challenge to find out for himself , and not to listen to the drug reps).
He offered to change me to another AI , but since I’ve only got 6 months to go on these d*mn pills I figured “better the devil you know…” Then he told me that once I’m off the pills the side effects will go away. Maybe not 100% but I’ll be a “new normal”
All the above to say that if your onco doesn’t take you seriously about what you are feeling challenge him to find out for himself. May work.
If anyone wants to talk about my delighted side effects feel free to write to me
DD
Glad that you finally have the acknowledgment from your oncologist Donna ?.
I’ve been taking it for about 9 months now and have trigger finger and thumb, wrist and elbow pain. New pain in right wrist only arrived today! My knees aren’t great and my hips cease up if I sit for too long. Apart from that and oh yes the insomnia and terrible vaginal dryness I’m just fine ??
1am and wide awake again ?. Have your side effects kept in developing or did they level out? I’m on Herceptin too so it’s hard to know what’s causing what. I’ve got another 4 of those to go will be interesting to see how I am after that. I walk a lot and eat well and am a healthy weight and I’m 51.
Thanks for posting. Appletree.
I would just like to say that although studies are helpful in informing us on trends in experiences, they do not necessarily reflect the individual lived experience, which as we are all aware, varies considerably between us all.
In respect of my own experience, I am not concerned about any cognitive effect from tamoxifen & do not feel any differently from before diagnosis nearly 3 years ago now.
ann
Absolutely, Kathy! We all find our own way through.
hi Appletree I totally agree that a woman’s medical history is not taken into account when prescribing hormone therapy. I realise that its not possible for doctors to know how an individual will react but in my own case I have had an ileostomy for 18 years and am having considerable problems with nausea and intestinal pain which is adversely affecting my life. I am seeing my oncologist on Monday so will see what he suggests (if anything) not holding out much hope. Fezzy x
@Optimissy, I don’t think it fair for you to refer to this information as Appletree’s research when she’s quoting the results of genuine independent studies - it implies that you’re putting this research on a par with your (and others’) individual experiences. In addition, both you and the other CC are on Tamoxifen rather than the AIs that are being discussed and are, presumably, pre rather than post menopausal and younger than most of us.
As somebody who is about to make this decision I think it’s important to know whether side effects will disappear when you stop taking AIs. I’m perfectly prepared to give them a go but if research shows that side effects will continue after stopping them or even some years in the future then there may be no place for that kind of “suck it and see” thinking, I’m afraid.
Stay well.