How long do side effects go on after stopping meds?

  • 5 replies
  • 282 subscribers
  • 844 views

I had a grade 2, stage 2, ER/PR/HER2+ and HER2- invasive ductal breast cancer diagnosis in Jan 2021, mastectomy (curative) in March 2021, EC-T chemo from May to Sept 2021, with a year of Herceptin (trastuzumab) injections. I was put on Letrozole Oct 2021 but got nasty side effects including hepatitis, so was swapped to Anastrozole in May this year. My liver function went back to normal, but the joint pain started ramping up again so I've been taken off that for a month washout before being changed to Exemestane.

I finished the Herceptin 4 weeks ago and the Anastrozole 2 weeks ago, but my joint pain is getting worse and I'm back on the pain-killers again. Is this to be expected? Does it take a while for the side effects to go away?

I have 2 friends whose breast cancer was cured several years ago, but it has recently come back in their bones. It's too early for this to happen to me, right? I can't help worrying.

  • Hi RedSquirrelsNuts

    Sorry to hear that you are in pain. If you haven't already done so it might be a good idea to ring your BCN and tell them how you are feeling.

    Hope this helps and hopefully your pain will be sorted soon.

    Best wishes

    Daisy53

    Community Champion Badge

  • Thank you for your reply. Yes, I probably should try. They have an answerphone with a 3 day response time, then usually we play telephone tag for another few days while they try to ring me at work, even when I leave my available times on the message. It doesn't make for a restful or reassuring experience. But I get it. They're ridiculously busy, and I'm not seriously ill.

    I was hoping someone on here might be able to share their experience while I'm waiting.

  • 5 days later and I'm still hurting. Has anyone any other thoughts on this?

  • Hi I get joint pain I am on anastrazole, my pain tends to be in my knees. Did you have a dexa scan before you started your meds. Best wishes let us know how it goes xx

  • Hi Shaz, no I didn't. I'm only 53 with no history of bone issues or breaks. Maybe that's why?

    My pain is in all joints from toes to hips, and from fingers to shoulders. My fingers are so swollen I can't get my rings on. My knees give way when I sit down on the loo. The pain wakes me up in the night when I turn over. It gets worse when I stay in the same position for too long, such as standing, sitting at work, watching TV. I'm better walking, but then I get tired.

    Your pain is only in your knees, not anywhere else? Do you take painkillers for it? Thanks for your reply.