I’m really struggling right now on Exemestane. Letrozole caused immediate intense headaches and it was stopped after only 5 days. I had a few weeks break then started Exemestane 8 months ago. At first, all I had was hot flushes & that didn’t really bother me too much. But gradually, other effects have built up. Joint pains ( made worse because I have Rh arthritis) deep bone pains in arms & legs that is not relieved with analgesia, not sleeping without medication, general malaise ( I think bordering on depression). My bone can also disclosed osteoporosis so this will likely deteriorate too. I just am not functioning well and I can’t face the thought of feeling like this for 5-10 years. I’ve had a good talk with my husband and he’s encouraging me to talk to my breast team this week about how I feel. But I’m conflicted. I don’t want to take any risk re recurrence but is it really worth feeling like this? I feel like the joy has gone from my life and that makes me sad because I have a lovely life, I idolise my family and have great friends. Have others taken the decision to stop their medication? ( I’m not saying I have made the decision, I’ll be guided by my team, but it’s difficult isn’t it?
Hi JennAnd welcome to the forum. I agree totally with you re the drugs we take and about the side effects of these. Do you still have a contact for the Breast Nurse? They could put all the details of your surgery scores, treatment etc into a tool called Predict and see what this scores in relation to how much benefit is this adding for you of these drugs over a 10 year period of time. Only when that is complete can you make an informed choice based on the best available information and evidence as to the risk of re-currence.
Oh so sorry about how you feel. These aromatase inhibitors are really rough. So many different side effects. Some do tolerate them better than others. I have an appointment with my medical oncologist in a few weeks and I am going to discuss some things with him. Honestly when 50-60% of women don’t finish their AI medication routine something needs to be done. Women are suffering and don’t know what to do. Hugs to you.
Barbara
I agree, it’s tough when the treatment makes you feel worse than the disease. If it was temporary, it would be tolerable, but 5 years is a long time to feel like this.
Hi
I have now completed one year on Anastrozole and Zometa, I am 62 but some days feel 92! Feels like all my joints and bones hurt, the hot flushes I can cope with,
everyday I wish I didn’t have to take them, my heart goes out to you… taking the decision to stop them is a hard one, I know I would end up even more anxious.
stay strong xxxx
Update. I saw my breast surgeon and we’ve agreed on initially a 2 month break during which time I’ll evaluate how I’m feeling. He took me through the NHS predict tool ( confusing as he still used version 2 which gave me a 2% higher survival rate if I continue with AIs but version 3 gives me 1% higher because it factors other risks in too- like cardiovascular damage from left sided radiotherapy). I’m inclined to think that 1% is not such a big improvement for perhaps 5 years of chronic side effects. Anyway, after 5 days off the meds there’s a definite improvement in my emotional symptoms and the bone pains but early days for the carpal tunnel syndrome ( that is debilitating!). Also, I told him that I’ve been having sharp pains in my treated breast & although I think it feels neurological, I’m having a full body scan next week. My BCN has referred me for councelling and complimentary therapies. I’m feeling more optimistic now than lately
I’m 9 months into Anastrozole with 6 monthly Zoledronic acid infusions. My joints especially my knees ache when I stand up. I feel tired in tbe afternoons. Trying weight loss and swimming I’m nearly 72 - hoping I don’t feel like this for 5 years. Won’t give up tthough.
Hi Kathy first of all
well done for getting this far and sticking to it! It’s so very hard. I am 53 and had Her2 positive ER7 breast cancer which is the aggressive kind. After a lumpectomy and lymph node removal in my left side I now am on my 6th month of Anastrazole blockers for 8 years!! I swooped from Letrazole. Now they want to put me on
Neratinib and Zoledronic Acid I saw you are on 6 month infusions and wondered if I could ask you how you felt after your dose of it please?
I am considering but the side effect list is daunting!! I look forward to hearing from you and anyone else with aggressive breast cancer?
Hi the first dose of zolendric can make you feel ill for a couple of days after that you hardly notice you’ve had it.
take care
Kathy
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