Femara/Letrazole

I haven't had those side effects but somewhere on here you'll find @arpie has posted a list of published side effects plus what women on the forum have reported.  For me, it's severe joint and muscle pain, stiffness, osteo-arthritis, vaginal and skin dryness, hair thinning, and fatigue.  Memory problems could be Letrozole or could be post-chemo!  I believe that changing meds does improve things for some and Exemestane in particular as it is a steroidal AI so a bit different but others may be able to provide more accurate information.

Dear @sickgirl
I have been on femara for seven years - my oncologist has studied the research and, like tamoxifen, thinks 10 years is better than 5. We’ll see. I don’t have nausea, joint pains, weakness etc but have experienced both vaginal atrophy and bone thinning. I’m monitoring the latter carefully - luckily my bone density was excellent at the start so I have some wiggle room. Oestrogen cream (I know it sounds counter productive but at my age - 74 - I am producing very little!) helps the atrophy. Unfortunately while there is research suggesting 5 years is better than none, and 10 years is better than 5, there is none to say if 7 or 8 is better than 10! So I am keeping on so far. A change may help, others have found that beneficial. Best wishes. 

Sorry, I meant no research to show 7 or 8 years is better than 5!

Hi @sickgirl - I had horrible side effects on Letrozole & only lasted 6 weeks.  Then I had 6 months on Exemestane to reach the same pain level & have now been on Arimidex for 12  months now & coping well - but I am sure it is the Medicinal Cannabis Oil that is helping me stay on it. It takes the edge off the pain & I am no longer taking pain killers or anti inflams.

Don't be afraid to ask your Onc 
1) for a break - 3-4 weeks
2) change to a different AI

All the best xx

Here is the side effect chart .... let me know any others & I'll add them!!  This covers ALL the AIs

@arpie hi thanks for reply and chart. I definitely have the majority of those side effects some are minor some worse and I have the eye floaters definitely. I did take a 5 week break and as mentioned felt marginally better but just haven’t changed meds yet.

Hi!  @sickgirl
We all react differently.  When you are feeling so crappy perhaps you should ask is there an alternative to try.  I did 6 months on Femara/Letrozole and my Onc was happy to change me. 

It's about trying to find a way to cope with ongoing treatment.
 
Do you see an exercise physiologist as that may help?  I was introduced to one that cares for cancer patients and it helped to manage some of the aches and pains.
In Victoria there's a program called Ex-med Cancer
https://www.exmedcancer.org.au/

Maybe this link from the BCNA website may help
https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/episode-11-exercise-and-breast-cancer/

Take care and best wishes and hopefully you will find what suits you best

Hi @iserbrown thanks for your comment. I’ve been on it for almost 2.5 yrs now and it’s like a roller coaster. The aches and pains are probably the least worrying it’s more the nausea, weakness and feeling faint. They have said they’ll change me, just worries me if all for nothing and end up with more or different side effects.  I’m on GC in Qld I wonder if they have a similar ex med program?

Hi @sickgirl

as to the Gold Coast there's someone on here, @sandramj who is actively involved in support groups in your area.  She may know of programs that may help

Here is one of her posts

https://onlinenetwork.bcna.org.au/discussion/comment/182930#Comment_182930

Hi @sickgirl. I run a support group on the Gold Coast for women with breast cancer (& some ovarian ) our group on Facebook is Breast & ALL Women’s Cancer Care Team GC. If you want to join you can like the public page, then ask to join the PRIVATE GROUP & answer 2 questions - we have 23+ members all currently undergoing surgery, chemo, Rads &/or other treatments.  

@sandramj Hi Sandra, wonderful to connect. Thanks for your response I have just liked the page and asked to join the Private Group.

Kaye ❤️