Forum Discussion
Arimidex. They’re kidding, right?My surgeon prescribed Arimidex increase
I’m 62 and was diagnosed with Stage 1 breast cancer in late March this year. I feel incredibly lucky not to have received this diagnosis as a young woman, as do many of you are. I also feel lucky that it was detected early and 2 breast preserving operations and 20 sessions of radiotherapy later, I was feeling relatively normal again. I’d been on HRT for 12 years (12 good years I don’t regret for one second), but as my cancer was hormone receptor positive I had to stop. I was really worried about hot flushes but Effexor really helped to reduce the frequency and intensity. I think the anti-depressant aspect had a positive effect on me too. I was really feeling quite chipper. My surgeon prescribed me Arimidex and said if I take it for 5 years, my long term survival prospects are better. I set myself a start date of 1 September and steeled myself for a resumption of debilitating hot flushes. Four weeks in, there was some but not a huge increase and I was thinking “Ok. This isn’t too bad. I can do this”. Then the arthralgia kicked in. I already suffer from arthritis in my right hip and knee, but a long acting anti-inflammatory I take had managed that perfectly well. Now, the pain is constant and keeps me awake half the night. It’s spread to other joints, including my right thumb which is “locked” every morning when I first get up. I read a couple of discussions on BCNA and started taking Panadol Osteo. Nothing. I feel almost crippled. Everything hurts when I get up from sitting or get out of the car after driving anywhere. I hobble like someone aged 92, not 62. I’m so fatigued I can barely gather the energy to drive the car and the most awful gloom has settled over me. I don’t see my surgeon until December, and being the sole practitioner of a small law firm, I have to work Monday to Friday and I have to be on the ball. I stopped taking the Arimidex 5 weeks in (last Saturday) and yesterday I started to feel well again and last night was my first pain-free sleep for about a week. I’m stressed about this because I want to do what I can to survive this psycho disease, but I really can’t live the next 5 years of my life like I lived the last week on Arimidex. If anyone has any tips or recommendations, remedies, drugs, anything that worked for them so that they could function on Arimidex, I’d be so grateful to hear from them. Alternatively, any good news stories about survivors who didn’t take Arimidex would certainly help me to feel hopeful. I’m pretty much the worst worrier I know, so anything positive would be a huge benefit to me. Thanks for listening. Claire
18 Replies
- Yes. Choosing between a rock and a hard place is no choice at all really.
- I'm sure you'll find it somewhere Claire. Keep advocating for yourself, work through your options and you'll get there, wherever that may be. Choosing to not go on hormone will take courage, just as much, if not more, than taking it. K xox
- @Zoffiel said she’s tolerating Exemestane much better than other AIs @arpie so that’s sounding more like possible good news for me. My onc told me in June that he wasn’t too worried if I chose not to start on HT before I see him again in early December so I’ll enjoy feeling normal for a bit longer and run through the options with him then. Thanks for taking the time to comment.
- @kmakm I don’t know what to say to you. You are suffering so badly, and I’m sure I didn’t take it long enough for the full effects to kick in. I experienced the thumb thing pretty early on and although I haven’t taken Arimidex for 3 weeks, it’s still “locked” every morning and it hurts at the joint near my wrist every time I lift something or unscrew something. That’s partly why I’m asking whether things go back to normal eventually. You are so brave. I need some of your courage I think.
- @Clairebear56 My ankles ache 24 hours a day with varying strength. Some days worse than others. Same with my hands, especially my thumb joints. I used to think they were better when the weather was warm but today it's hot and they are really sore. Exercise makes no difference, Panadol-Osteo doesn't touch the pain. I'm currently working through what I've got in the cupboard to see what does help for when it gets bad enough to interfere with my day to day activities. I am generally very stiff after being still for a time, and if I sit for a time on a hard chair my coccyx hurts like billy-oh as I get up. I had zero aches and pains before Letrozole other than a bulging disc in my lower back which the remains the same.
When I first started Letrozole I was constipated for several months. That has eased a bit, though my 'movements' are not what they were before BC. I manage that with Osmolax as I need to.
I get mucosal dryness, ie dry nose, eyes and especially mouth. Again this has eased somewhat after the first three months. My skin is dry for the first time in my life, and I now have dandruff.
Chemo put me into menopause and Letrozolexis keeping me there. I've a lot of life 'stuff', and between that, menopause and Letrozole, I am depressed and anxious. Both of those are side effects of menopause and Letrozole, but where life, cancer, menopause and Letrozole begin and end I have no idea. I am taking anti-depressants and seeing a psychologist, both for the first time in my life.
My oncologist has confirmed that for some, the side effects of Letrozole (the AI that reduces your estrogen the most) subside after six months. I am persisting until then. With her blessing I am having a month's break in December. I will then go back on and if there's no abatement in the side effects she's going to switch me to Tamoxifen. I am nervous about that but life is such a struggle for me at the moment that I have to consider it.
Remember, some people have little or no side effects. I'm just unlucky that I'm getting a few (there are 61 listed for Letrozole...).
Above everything is the need to take something. My tumour was so highly ER positive that there's no question about it. I plod on. K xox - So sorry the side effects are so severe, @Clairebear56. Are you able to do a phone consult with your Onc? I seriously think you need to let them know just how badly it is affecting you.
I was on Letrozole for 6 weeks with lots of nasty side effects and hated it. I saw my Onc and she changed it. Now on Exemestane and doing MUCH better.
All the best ... I hope it gets sorted sooner than later for you (and at least before Xmas!) xxx - Might be late to this party - haven’t read, braindead - but I take Meloxicam for my joint pain and it actually stops about 80% of the groaning old lady sounds I make if I have to get up out of a chair. I took it for a rib injury at first. Then realised I didn’t have agony in my metatarsals, knees, shoulders, wrists as much.
Im on Zoladex and Anastrazole. Goddamn it. Wish I wasn’t. But the arthritis drugs seem to work for me? - I was not in mint condition before all this started (again) but the joint pain is certainly better and I feel some of the mental fog has lifted as well. I still feel vaguely 'wrong' but, for the most part, my sleep has improved so I have more energy. One woman's experience does not a scientific study make.
- And @kmakm, what sort of side effects are you experiencing after 5 months and how do you manage to tolerate them? Are there any drugs/therapies that assist you?
- @Zoffiel I feel really sorry for you - 10 bloody years - at least my recommendation is 5, but maybe that's just because it's Arimidex (which I've already decided I am NOT taking).So, after a couple of weeks not being on it, you were almost back to normal? What side effects does Exmesetane give you? Fatigue? Joint pains?
