I’ve been on Letrozole (Accord) for 5 months and am really struggling with certain SEs and really need some advice / experience.
I’ve had looser stools, which is tolerable, and other minor issues eg a ringing in my head. I can cope with these, and really need to be on something as my cancer was triple pos but I was unable to have either chemo or herceptin due to a pre-existing condition (HypERparathyroidism).
Around 7 weeks ago my right ankle just went on me, with no reason, as I was walking upstairs. I’d had ankle swelling for a month or so prior to that. I did as advised - rest, ice etc. - and very gradually increased my walking. But 3 weeks after that the same ankle went again, while I was simply standing up and ironing. Again, no obvious cause. I was told it was tendons or ligaments.
This has terrified me. 4 weeks on and I’m virtually disabled. I am having to limit the stairs to once a day, which is a struggle. I’m really struggling with the shower and can’t do even the slightest of uphill slopes eg ramps. We’ve had to buy a wheelchair so my hubby can wheel me up the disabled access ramp to our door and any other uphill slope. My other ankle is also now very swollen and inflexible, although that ankle and leg has been weak for a few years. I’ve got golf ball like swellings on both ankles.
My right wrist tendon sprained when doing nothing other than leaning on my husband and my hip tendons have been aching.
My BC surgeon said, 6.5 weeks ago, that it couldn’t be the Letrozole. But I rang the nurses in floods of tears last week and they said to pause for 6 weeks. I feel very very low and can’t even get dressed on my own. Can’t do anything without planning, can’t walk properly, def can’t go for walks outdoors, and am struggling to get in and out of the shower.
I’ve been referred to MSK, after 7 weeks of pushing. Have X-rays this week. But I am v v low. I know I need the meds but I honestly can’t cope with this soft tissue damage and being unable to walk or be independent.
Has anyone else had this soft tissue issue? What have you done? Is there anything you’ve found to enable you to take the meds but have a life? Eg rehab or MSK? I’m desperate to find answers to what’s going on and to walk! I’m terrified of long-term, irreparable, damage if this goes on.