Tolerating Oestrogen blockers

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.

Thank you, I’ll do that

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 

I’m also thinking of stopping anastrozole and going back into tamoxifen and ovary suppression. I started my AI’s in June, I phased up gradually. Tamoxifen from November, ovary suppression from March but it’s been a nightmare since June. The fatigue is unmanageable. I’m only 42 and have a 2 year old to think about. 
I know it’s the gold star standard of treatment for triple positive but is it worth it? The extra 1-3% reduction in recurrence?

With all the data coming out about the benefits of structured exercise, I’m beginning to think that focusing my energy on getting strong and working out will do more positive things for reducing my risk than an AI will. 

Am I crazy thinking that??