I felt it would be a good idea to have a thread for this which people can use to ask questions, especially about side effects.
i've been on this for a bit over 2 1/2 years and the hot flushes have eased but my joints are feeling my age (75) but they didn’t used to beforehand. My kids describe me as a bit crazy (a have-a-go type person) and still think of me that way (which is nice) but I’m definitely feeling more 50’s than 40’s!
I've been advised I can swap to Tamoxifen and have some already but have recently had a scare of a possible DVT which has made me reluctant.
any ideas? I’ve asked if my GP can discuss but that was last week, they aren’t exactly forthcoming with contact these Covid-days.
Hi moomyhave you looked at all the research on alternative dosing regimes with letrozole? A lot of people think that alternate days is just a good. The half life is at least 4 days minimum. I tried that for a few months, but I still had everything dry out, raised blood pressure, joint pain, eye issues and (with Femara not Accord) dizziness.
no I haven’t seen that, interesting. I just have had skeletal troubles as I already had some osteoporosis pre cancer. That’s why the suggestion to swap to Tamoxifen.
but after my scare last week I’m ‘still’ waiting to speak to GP! I really want a decent discussion about it all.
One study concluded:
We conclude that low and intermittent doses of letrozole (as low as 1/24th of the total dose received in the standard dose arm) were not inferior to the standard dose in estrogen suppression at the end of agent intervention. The effective estrogen suppression with low and intermittent letrozole doses was accompanied by similar adverse effects on C-telopeptide levels when compared to standard dose. The changes in QoL and self-reported AEs were also similar among the dose groups. Future studies should characterize the relationship between the extent of systemic estrogen suppression and breast tissue drug activity and side effects to evaluate the feasibility of selecting an AI dose/schedule for effective estrogen suppression with a favorable side effect profile.
So reducing dose still not that beneficial to skeleton or QoL then? Interesting.
I’ve a telephone consult with my GP next Tuesday to review which drug to use. My skeletal problems could well have come on anyway (as I was already osteoporotic prior to BC) and years back I was getting small joint problems so queried rheumatoid factor but the blood test was negative.
Yes I have recently been diagnosed with er+ positive breast cancer, I am having surgery in a few weeks for mastectomy and have been told I need to take hormone inhibitors for 10 year, the side effects I have researched look very bad
Please don’t worry too much, my s/es really aren’t bad; my BCN said most begin in the first couple of months and can worsen but then ease off by the time you get to 6 months, she’s right!
my problems really are as a result of getting older and my tendency to arthritis and my osteoporosis.
Hi. Know I've not been around for about 9 months! I've been on tamoxifen for 12 months now. Was given choice as told I was low risk. Went for it because I do fall over at reg intervals and osteo probs put me off letrozole a bit. My main issues with tamoxifen have been increase in anxiety, sudden deterioration over 6 months in my cataracts ( have now had one done, waiting for other) vaginal discharge requiring panty liners and episodes of exhaustion!! Also there are noted interactions between my anticoagulant meds and tamoxifen though I have asked BCnurses, cons. and GP and they are not concerned. This is the price you pay for having been a nurse!!
I am eager to discover what statistical diff the tamoxifen makes to my chance of recurrence and have requested a copy letter of my last consult in Feb which never turned up. Once I have this am intent on contacting BCNs as I'm 76 and feel really old!!
I believe tamoxifen hangs about for about a month after last dose so Ihopefully you'll get a month off for good behaviour. I am wondering re letrozole as less interactions with my other meds but I believe have to have dexa scan before starting and with covid that could be a long wait