Side effects of Femara

DebKDebK Member Posts: 2
I am 59 and had a mastectomy in 2010 after early stage BC. No chemo or radio. I have been on Femara for 4 years after 3 years on Tamoxifen. I had been experiencing memory loss and feeling a little dulled. So my oncologist took me off Femara 10 days ago and now my symptoms have worsened. I have brain fog and keep mixing up words and feel "scattered". Has anyone experienced this on Femara or immediately after coming off Femara? It is very unsettling. Hope to hear from someone who can relate to my story. 

Comments

  • RomlaRomla AdelaideMember Posts: 1,371
    Hi Deb have had that effect but not from Femara. Statins for lowering cholesterol was shocking for brain fog - couldn’t even select the right word when I was having a conversation - stopped taking them and within 3 weeks back to normal. I raised this as Femara elevates cholesterol and wondered if you had been prescribed statins.
  • AfraserAfraser MelbourneMember Posts: 1,551
    That doesn't sound like anything you really want, what a pain! I've been on Femara for four and a half years, but haven;t encountered the same problem (other problems, but not that one). I hope I don't when I go off it next year!!  Perhaps someone else can shed some light on it?
  • DebKDebK Member Posts: 2
    Romla said:
    Hi Deb have had that effect but not from Femara. Statins for lowering cholesterol was shocking for brain fog - couldn’t even select the right word when I was having a conversation - stopped taking them and within 3 weeks back to normal. I raised this as Femara elevates cholesterol and wondered if you had been prescribed statins.
    Hi Romla
    Thank you for your comment. No I am not on statins. I hope I return to normal like you did!
  • primekprimek Broken HillMember Posts: 4,292
    Oh bugger. Hopefuly it will clear and an alternative medication will give you less issues.
  • UnicornkissesUnicornkisses Central CoastMember Posts: 395
    Sorry I can't help with Femara as I am yet to start it, but I found that I have that problem anyway since menapause kicked in properly. Can't even carry on a conversation when I am tired.
    I was put on minimal dose HRT and wow, the side effects cleared, back to normal again.
    Breast cancer diagnosis and off HRT, back to fog and speech problems again.
    Treatment side effects of surgery and chemo made it worse, as has radiation. I am going through radiation at the moment and my brain is shattered, I cannot think straight.
    If it is not written down and referred to constantly, I will forget it, it is frightening.
    I think it is a combination of stress and fatigue.
    Perhaps talking to a cancer related psychologist could help you, they may have some relaxation strategies to help, some insights into why it is happening and how you can work on them.
    My biggest fear is losing my words and conversation ability, I feel it is an essential part of who I am and I am a very organised, competent person, usually.
    I will be discussing this with my psychologist at the Cancer Centre on Thursday.

    I hope you find some way to get back to being you, too, Jennie
  • RomlaRomla AdelaideMember Posts: 1,371
    @Unicornkisses My heartfelt sympathies -remember oh so well menopause in my 40s - the only thing I can add is these days women talk about it and that makes it less isolating- I remember thinking I was losing my mind. Re radiation - it does cause engulfing tiredness which impacts on brain functioning which should eventually lift after completion but may take a while. It is frightening not being able to think straight or string together a coherent sentence - talk to your oncologists about it too. Above all be kind to yourself during this period including relaxing some expectations you have of your capabilities and try to go with the flow 
  • AfraserAfraser MelbourneMember Posts: 1,551
    Ah well, I think I have just agreed to do another year of femara!!  My bone density tests are interesting - from an excellent bone density rating at the start ("for my age" as everyone feels obliged to say!), my bone density has gone down, but not too much. My left hip has always been the worst bit of me (I blame carrying children!) but my density in some areas has actually improved since my last test 2 years ago. Thank you low fat milk, calcium tablets and weightlifting!  Problem is that while recent research indicates 5 years good, 10 years better for femara as well as tamoxifen, no-one knows where this curve lies, ie do you get an incremental benefit every year or do you need to take it for at least 8 years for the benefit to kick in? Not known it seems. Ditto bone density - not sure if it gets worse gradually (mine actually hasn't) or in spikes. So taking femara longer may improve my chance of not getting cancer back, but it may also increase my chances of osteoporosis (which I don't have). I am thinking, and my oncologist is supportive of whatever choice I make, of continuing femara on a year by year with bone density monitoring - plus having prolia shots to assist in safeguarding my hip. Be interested if anyone else has been on this path and their experience.
  • RomlaRomla AdelaideMember Posts: 1,371
    I had osteoporosis when I started Letrozole/Femara last August. As I had had an osteoporotic fracture I was able to access 6 monthly Prolia  injections at the PBS price $38 rather than $275 .

    I do not recommend bisphosphonate tablets which is the alternative to Prolia due to the risk of ONJ when dental extractions/ root canals etc are required. I took them some years ago and needed an extraction and found it nearly impossible to find a dentist to help me - only Prof Goss who is head of our dental school would do so after a blood test called crosslaps which established my bone was still turning over..Prolia exits the system after 6 months allowing a window for dental work - bisphosphonates stay in the system long after you cease taking them.  

    I was very worried about having the injections because of Dr Google but know so many on these injections who are fine plus am aware they further reduce risk of breast cancer recurrence.In NYC Prolia is prescribed for bc patients even if they do not have osteoporosis to reduce the risk of recurrence.

    I will be having a bone density test this August to see how my hips and spine are as part of my annual check bc checkup. I walk daily and do light weights twice a week.I also take Caltrate Bone and Muscle Health 2 tablets daily as per recommendatiom from the Australian Osteoporosis organisation (?).I too try to ensure adequate calcium in my diet - yogurt , cottage cheese etc.

    Be aware Femara/ Letrozole can cause your cholesterol to rise sharply - I am careful with hard cheese and take low dose aspirin and Krill Oil tablets.Be careful if you have this issue and are offered statins - I found they caused major memory issues after about 4 months which was frightening but reversed rapidly after I stopped taking them.

    Hope some of the above may help and if there is anything else I might be able to answer please ask.Will be most interested to hear how you go over the next 5 years but not sure if it will be an option for me .
  • AfraserAfraser MelbourneMember Posts: 1,551
    Many thanks @Romla. Yes I can get Prolia injections at the subsidised rate if I have osteoporosis or a bone density related fracture. As I have neither, I think I am willing to pay the full cost rather than wait for one of them to happen! As I have muttered before, proactive treatment seems contraindicated! Worth noting the dental issue, thank you. Mercifully my teeth seem pretty OK. Keeping my calcium intake up seems to have paid off and my cholestoral is fine. I am not committing to five years yet - 12 months at a time I think and my oncologist is happy with that. Onwards and upwards! 
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