I have done 2 years of Tamoxifen and I lasted 3 months of Letrozole. In all that time I have been unable to work and have been too lethargic to do much at all.Yes I was one of the few who had pretty bad side effects and it was really getting me down.I was thinking is this my whole life now? This aching body, is it permanent?Well I have gone off the Letrozole for three weeks. Only a couple of days in to it but I have energy! The aches are gone! I feel fan-flaming-tastic! I am gonna be ok. <3

Hi @Brenda5, I'm still relatively new that this (diagnosed Stage 4 last Oct), but I found if I take the Letrozole in the mornings I'm cactus and extremely fatigued all day. If I take them in the evening, I don't have any of those issues and I can get thru a day without fatigue. Just a thought... :)

I absolutely agree. No pain, no gain, so I will persevere with the letrozole. I have started taking it at night, the pain is the same, but the fatigue seems to be better today, so I figure I'm winning. I hope I'm fit enough to swing a chainsaw when I'm in my 70's, you go girl!!!! :)

That's wonderful @Brenda5.How's the risk assessment voice in your head going? Ie, if you have a recurrence, will you be OK with pulling the pin on the hormone therapy now? I don't want to rain on your parade! Just curious about where you are within yourself on this topic. K xox

It's worth taking the break to get an idea of what is achievable when it comes to 'normal'. Mentally, that was a big thing for me. I needed to know what misery I could attribute to the AI and what was a consequence of dragging myself through another round of treatment, ditching my ovaries and just getting older. Now I know that if I stop taking them there will be an improvement in my general well-being except, of course, my chance of having another episode increases. So,the deal with myself is that I will tolerate the side effects for as long as I can. There is a way out if it all gets too much which is a strange comfort, but comfort none the less. I have found Exemestane to be less of a problem than the other two, but it wasn't my oncologists first choice and I'm not pleased about my new, distinctly middle aged waistline.

And don't forget, @Shero that if you DO get bad side effects, you can also have a 'break' for a month or so every now & then .... or ask your Onc for a change of AI. I also went onto short courses of low dose prednisone every now & then too - which was even better than a break!!I started on Letrozole & only lasted 6 weeks (coming from existing arthritis - perhaps that made it worse?) I told my Onc I couldn't tolerate the pain - and she changed me to Exemestane (which I was on for 6 months before similar issues arose) and have now been on Anastrozloe for over 3 years & going much better. So don't be afraid to ask about the other AIs too - and DON'T suffer in silence!! ;)

Hormone therapy, it will be ok. :)

17 Replies

Shero
Member
4 years ago
This is an update as promised. I've found that taking the letrozole at night seems to have mostly done away with the fatigue. I'm probably not sleeping as well, but I'm happy to put up with that. Thank you so much @Brenda5 for suggesting it
Caz1
Member
4 years ago
Letrozole made me feel rotten. Have been taking Tamoxifen since new year and it is much better.
Caz x
Nannawill
Member
4 years ago
I was on Arimadex and the side effects were a few but the ones I didn’t like were the fatigue the low moods and the irritability also the lack of motivation. My oncologist took me off for two months. I felt back to my normal self after 2 weeks. I had to start on Letrozole and now I am back to square one. If I mention the fatigue to my OC I will be told to exercise.
I think I will try taking it at night and see if it helps. Thank you
Shero
Member
4 years ago
I absolutely agree. No pain, no gain, so I will persevere with the letrozole. I have started taking it at night, the pain is the same, but the fatigue seems to be better today, so I figure I'm winning. I hope I'm fit enough to swing a chainsaw when I'm in my 70's, you go girl!!!! :)
Zoffiel
Member
4 years ago
@Shero I've been on hormone blockers for coming up to four years. I really don't like them, but I really, really don't like the alternative having already had one recurrence.
I'm just getting dressed and heading out the door to spend a couple of hours cutting firewood. I'm not looking forward to that, but if I want to be warm in the winter, that's the price I pay today. Same deal as the drugs, in my way of thinking.
Mind you, swinging a chainsaw around was much easier when I wasn't in my 7th decade and wasn't taking pills that make me feel like I'm in my 9th.
noosa_blue150
Member
4 years ago
I started on letrazole , and lasted over 6 months. I’m now on exemestane .(aromosin) I think the joint pain is worst for me on exemestane but I don’t seem to be getting hot flushes. I’ll persist for a few more months as I’ve started cq10 tabs and I’m back at gym so,will see how,it goes. It’s a matter of trying them out and finding which one is best fit ( lousy description for hormone blockers I’m sorry ). I’m now stage 4 breast cancer with a bone secondary , so I need the blockers to,slow,down progression of disease at this stage as much as I detest how they make you feel.
I’m going to try taking at night - see if that makes any difference to symptoms
Shero
Member
4 years ago
Thank you for your kind words. I will ask the oncologist next week :smile
arpie
Member
4 years ago
And don't forget, @Shero that if you DO get bad side effects, you can also have a 'break' for a month or so every now & then .... or ask your Onc for a change of AI. I also went onto short courses of low dose prednisone every now & then too - which was even better than a break!!

I started on Letrozole & only lasted 6 weeks (coming from existing arthritis - perhaps that made it worse?) I told my Onc I couldn't tolerate the pain - and she changed me to Exemestane (which I was on for 6 months before similar issues arose) and have now been on Anastrozloe for over 3 years & going much better.

So don't be afraid to ask about the other AIs too - and DON'T suffer in silence!! ;)
Locksley
Member
4 years ago
I am also on letrozeole and have terrible bone pain. I cant kneel down to garden, clean the shower etc. I'm very tired and fatigued. I have been on it about 10 months and often wonder if this is as good as it gets....I used to take it in the mornings and I switched to evenings and feel it is better for me to take at night.
Shero
Member
4 years ago
I have just retired and the thought of spending my retirement so fatigued is depressing. I will give it a go and update :smiley: :