Letrozole

I'm almost up to year 8 on AIs - 4 years on Letrozole with the remainder on Anastrozole.  I'm one of those who had pretty severe side effects in the first few years.  For me, I lost my sister to this disease - she never had the opportunity to be on these drugs.  A dramatic way to say why I pushed through (eventually discovering CBD oil to overcome the worst)..

Please remember that you may tolerate the drugs really well and if you don't, you can stop.

Me too re diagnosis ( April Fool's Day). I'm also on Letrazole and have moderate side effects. I'm reckoning that if it works to halt the tumour growth, I can hack them. I often have side effects to different medications for my ageing body, so mo change there. Keeping busy is my antidote, so surgery next week will be another challenge. I'm up for it.😘

Hello Kezzagal​ 

I've now been on Letrozole for just over 2 years now. (7 years, 11 months and 8 days to go - not that I"m counting). I had a lumpectomy, radiation and tried Ribociclib but this did not agree with my liver. I was diagnosed Stage 2B, grade 2, ER/PR+ HER2-.

The biggest side effect for me is the joint pain. I had 2 years of Zoladex but have just last month ceased this (i was perimenopausal when diagnosed, hence the decision to add ovarian suppression into the mix). My hands & feet are painful most days, especially so when I've been sitting (like driving) for a while. Motion is lotion, so they do feel better once I walk around. my McGrath nurse kept saying 'you need to exercise'. I swim 1km twice a week, lift weights at the gym twice a week, and average 5000 steps per day - so I'm not sure how much more exercise I can do. 

I've tried green medicine but this didn't have a positive affect so I gave up on this. My med onc has offered me a drug holiday but I'm scared that if I feel a lot better, the thought of having to return to letrozole will be too much. We continue to discuss changing to another AI but I know that Letrozole is the most proven effective for my sub-type, so I'm trying to persevere as long as I possibly can.

I know that some people don't have any side effects. Alas, I wish I were that person. The med onc was and is also reluctant to say whether symptoms get better or worse over time, so I can't even tell myself 'this is the worst this will be'. 

Absolute best of everything to you, x

Hi Kezzagal​ 

I was on Letrozole for 5 years. The only side effect was on my bone density. Since coming off it in December I have experienced weight gain. I am not sure if this is common and will speak to my Dr about it. 
Best of luck for your surgery. 

Hi Kezzagal​ 

I did a full ten years on Letrozole - five years was recommended at first, but by year four my oncologist (good on research, cautious unless results are verified and replicable) advised that ten years was probably better. At the time (may have changed) there was no research to indicate whether seven or eight years was better than five (which would have been helpful). I never had joint pain or menopause type symptoms, including hot flushes (I was way past menopause). I did develop vaginal atrophy and Letrozole clobbered my hitherto excellent bone density. To be fair, both of those problems were almost certainly exacerbated by age. Now 80, my bone density is about par for the age group! Also, because my estrogen levels are falling by the hour, I can use topical estrogen cream to address the atrophy.

I am getting on for fourteen years post diagnosis, and so far, so good! I suggest, if it hasn't already been suggested, a bone density test to see where you are now before Letrozole changes much. If, like me, your bone density is good for your age, it's a bit like money in the bank - you can afford to lose a bit. 

Best wishes for your surgery and recovery.

Hi Kezzagal,

I've been on letrozole for 8 mths now & the only main side effects has been hot flushes.