Recovery time after Anastrozole/aromatase inhibitors

@chevm I do hope your hand pain improves ,as I know how debilitating and frustrating it can be. It is the unpredictability of the AIs that I find difficult.i had been taking Anastrozole for 18 months and had bad back pain and muscle pain in legs, but then out of the blue developed severe pain both hands making everyday tasks like food prep agony! It has sort of plateaued at present but I am so fearful it will worsen. Best of luck.

I stopped anastrozole two weeks ago after 18 months. The nightly leg cramps, painful trigger fingers and sciatica have gone. Ibuprofen helps my osteoarthritis so I'm feeling better and not going back on any AI. With a 4% chance of recurrence, I'm willing to take the risk. I have friends who took AI's and told me to "push through it", but the pain was too much for this 77 year old. You know what your body is telling you. Might be different if I were younger.

@gerry26 I too am beginning to think on these lines.

I was on letrozole for a month. I developed eight side effects but none of the pain in the bones that are so common. Terrible G.I. issues or among the worst. The doctor took me off it for an AI holiday and they expect to put me on another one in about a month. I am now four months out from having stopped the AI and though some symptoms have subsided other symptoms have continued to ramp up, and I have continued to develop new symptoms. Recently my hair has started to fall out. Internet research indicates that when you stop an AI, the symptoms can continue to ramp up for around six months, but some symptoms for some people never go away.

@galesy this is my big fear

had been taking Anastrozole for a bit over 2 years and suddenly developed severe joint pain throughout my body. My doctor said to take a holiday from the drug for a couple of months, and my pain started to subside after 2 weeks. By week 4, I felt good and returned to my full exercise routiine including resistance 3 times per week, brisk walking every day, and gardening. I'm older, 78, so that has to be considered. My experience has been that regular exercise, even a bit challenging, is what moves the needle on side effects. It's hard to motivate a sore body to work out, but the immediate results have always been good for me. I'll be returning to the drug, but only every other day. I'll report in several months after I restart.

Hi oregonmbcsurvives - in my 70's also and have been on Anastrozole for 3 years. Also regular walking/hiker and was starting to get the awful joint aches - definitely slowing me down which made it hard to even get out. Also had headaches and some lower GI/female issues and mentally just down in the dumps with frustrating brain fog. My oncologist said said okay to take off two weeks and I am so much better - shocked I feel physically and mentally so much better. Noticed you doctor is suggesting a couple of months off Anastrozole then going back every other day - any info on why your doctors willing to extend your vacation longer? Mine wants just the two weeks then back on daily dose and/or another inhibitor - have you had extra testing that indicates the cancer is not returning after your vacation?

@gerry26
I feel the same as you, I had different side effects including depression, brain fog and insomnia which affected everyday life. I am currently on a break now from Exemestane (was on it for 5 months) for 3 weeks and feel good and back to myself. I have an appointment with my oncologist September 10. Did your oncologist suggest another AI for you before you decided not going back on anything. I'm very hesitant to try another one. How do you mentally accept the risk? I am 65, ready to retire and have a 5-7% reoccurrence risk. I don't think it's worth the suffering either. Just like you said, if I was younger, it would be a different story.

@polsb05 My Oncologist said it was okay to take a break. I won't see her until next month and then I will tell her I'm done. All of the AIs cause painful joints and I already have pain from osteoarthritis, so double whammy for me. Surgery was recommended for trigger thumbs, but they are fine now. Once the pain stopped, it was an easy choice. At 77, if cancer should return, I'd opt for mastectomy, no chemo. Just want my remaining time without such pain. Your still young and may want to try another.

@gerry26
My thoughts exactly!! If it does return, I'll do the mastectomy as well, no problem. Although there will be aches and pains that I can't control from aging, I want my remaining time to be as enjoyable as possible since I will be retiring soon. I've only tried the Exemestane which they started me out on as my oncologist said that's what everyone ends up on from the Anastrozole and the Letrozole, (what I heard in those words, so why bother) so doesn't inspire confidence in those. My most recent bone scan (3 weeks ago) showed osteopenia in the hip and I have osteoarthritis in my knees. My previous bone scan was 2 years ago before my DCIS diagnosis and no evidence of this at that time. I had a hysterectomy/oophorectomy in November and lumpectomy with breast reduction and radiation in January and February. Yes, I got hit with a lot in a short period of time but all my margins were clear with both. My reoccurrence rate is 5-7% which I think is low. I'm just wrestling with going against the doctor's advice but I'm trying to convince myself to go with my gut. Everyone says why not do everything you possibly can to prevent reoccurrence (no guarantees) but I'm opting for quality of life while I have it.
Sorry for rambling on and thank you for your response. Wishing you health and happiness in the future.