I really need to vent a little. I’ve been on zoladex and exemestane for just over 6 months now and I’m really struggling. I had bone and joint ache for the first 3 months and although quite bad I could cope with it. The pain has lessened a lot now, with hand stiffness and aching being the only exception, but again I can cope fine with it. What I can’t cope with, and this has gradually worsened over the period of time is the fatigue and brain fog. I’ve gone from working 4 days a week, to working 3 mornings a week to now not being able to work at all. I work as a SEN teaching assistant which is physically and mentally demanding, but I can’t even manage normal non-working life let along work. I am nowhere near the person I used to be - I’ve always been quite active and did a lot of outdoor adventure activities with the boys at the school I work at. I’m putting on weight and I’m trying to get out for small walks and have a weekly 1:1 PT lesson and I eat a lot healthier than I used to but I’m getting more fatigued and depressed the more longer I’m on the meds. I also take sertraline. I have an appointment with my oncologist next week and I really just want to stop taking my meds although my er and pr scores were around 7/8 so I know it’s not a good idea. Saying that, I’d rather have a shorter good quality of life than a longer bad quality one! As i say, I’ve an oncology appointment next week and I want to let her know exactly whats going on and ask what options I have. Anyone else gone/going through this and can offer advice or advise me what to ask my oncologist? Many thanks in advance xx
I didn’t have extreme fatigue on Zoladex but I was tired all the time. For me it was temporary, a I needed to take it for 6 months only to protect my ovaries throughout chemo and then things got back to normal.
I think it makes sense to raise this with your oncologies to see what other options are out there. However, above all, it is important to be kind to your body, it has been through a lot and sometimes it just needs some rest. It’s normal and no need to push yourself too hard to try to get things “back to normal”. Sometimes they just don’t. My husband was experiencing a lot of stress-related fatigue and his doctor literally recommended him just do nothing one day per week. Sleep as much as he wanted, do nothing, sit on a couch and read. He now feels much better, as he has stopped pushing his body too hard.
Weight gain is sometimes linked to hormones and not to reduced physical activity, in particular if your diet is good.
I personally have found that therapy also helped me focus to my body and listen to it. Focus on the things you CAN do instead of the things you CANNOT do. I couldn’t run for a long time but I COULD walk a lot and I really enjoyed it. I COULD play tennis as long as I was not running too much but rather walked (and my husband was sending the balls my way). These things made me very happy.
@jolly_bongo_owner Hi, I did not have the fatigue with Exemestane but did have joint pain (and with hindsight) low mood. After 18 months on it my oncologist suggested I switch to another AI l even though I said it was manageable. Was nervous about 3 week break but do glad I switched, much happier on Anastrazole. Didn’t think there would be much difference between the 3, so might be worth you switching and see if that helps. Good luck!
Hello jolly_bongo_owner (excellent!)
After diagnosis (Invasive Lobular on the left and Invasive Mucinous on the right, simultaneously, and with one node affected - badly), then double mastectomy (no reconstruction), axillary clearance one side and radiotherapy (no chemo) - all done by end of 2022 - I tentatively started the AI Anastrozole (after five months of prevaricating). I had high hormone results of ER8/8, PR8/8, HER2 neg.
Side effects were very noticeable from the outset (with the 6-monthly zoledronic acid infusions seeming to compound symptoms) but just about tolerable for the first few months. Beyond the 6-month mark, joint pains escalated to the point of not being able to hold plates, open jars, write properly, climb stairs without using arms too, or go for a decent length walk. It was hard to fall asleep, hard to stay asleep, I was so lethargic, demotivated and in a bad mood most of the time (poor hubby). At 10 months I gave up the drugs entirely without trying alternative brands of Anastrozole or other AIs. Basically, they all starve your body of oestrogen - great for inhibiting cancer growth (although no guarantee), bad for all the other bodily functions that need it. It took a good few months to completely get back to me, apart from noticeably thinned hair which has never recovered, even after more than a year now.
I tried to have proper conversations with 3 oncologists, but they were all quite dismissive and pro the continuation of medication. (They would be, that’s their speciality.) In fact, none were prepared to say anything helpful or remotely encouraging regarding the choice to live normally again without the drugs. All they suggested was alternative similar drugs, or additional drugs and exercise, to try to counteract the side effects.
I’m NOT encouraging you to take the same risk / choice as me. Challengingly, it’s one you must make for yourself. Hopefully, you’ll make that ultimate decision the best you can by gathering all the points of view and experiences out there. I wish you enormous good luck in feeling settled with that choice. 