Hi All,
I haven't been around here for a while but know I will get some support if I reach out.
I was diagnosed with invasive lobular cancer ER+ PR+ HER negative in December 2020. I had a mastectomy in January, Chemo March/April, Radiotherapy June 2021.
I've been on Letrozole for about four months now and I thought I was over the worse! I really did! And I've got another 4 years to go. Yes the op was awful, chemo really awful but radiotherapy a doddle (for me anyway). No one mentioned just how bad the side effects of this tiny little tablet could be. My bones and muscles in my arms/shoulders have never hurt so much. I feel 99 (actually 69) and my 92yr old father-in-law can get out of his chair quicker than me at the moment.
I'm not sleeping much at all with the pain and also restless legs. The last few days have just put me over the edge. Feeling so tired, weepy (not like me at all) and just getting to the point of saying 'give me my HRT back - I'll take my chances' - but I know I won't.
My doctor has given me 5 options!
1. Sleepeaze from Boots the chemist
2. Sleeping tables (very addictive)
3. Anti depressants
4. Amitriptyline - another type of anti depressant
5. Do nothing!!
I'm going to try the Sleepeaze first and see how things go.
Anyone else out there feeling like me? Anyone else found a solution to not sleeping/pain?
Love to hear from you. Thanks.
SueHMac
In the US they use melatonin, which has the added bonus of apparently reducing recurrence a little. I bought some in Spain from the supermarket and it gives a lovely all over tiredness feeling and I usually sleep about 5-6 hours, longer than my usual up twice, and fall asleep again. I only take them if I haven't slept well for a few days. It's prescription only here so you'd need to speak fo the doctor if you were interested
Thanks for your reply. I'll speak to my doctor about the melatonin
I'm having a 4 week break from the Letrozole and then starting Anastrozole, hoping it will suit me better. I think it depends on what type of breast cancer you have on what tablet you get.
It's good that you are ok with the tamoxifen. I'll try whatever they offer as long as I can get rid of the aches and pains.
I started letrozole two weeks after I finished radiotherapy. Soon the hot flushes arrived, by four weeks I was having pains in my hands + trigger finger on one hand; by five weeks I was only managing two hours sleep a night before waking up again; past few days my knees feel tender; I get the odd twinge in feet/ankles. I was taking the pill before bedtime so changed to morning but then had headaches (worse behind eyes) for three days straight that I went back to taking the “yellow peril” late at night. I’m hoping things will settle down as time goes on. With ER+/PR+ both 8/8 I can’t see myself not taking AI’s. I have an appointment Friday with oncologist, it’s been three months since last one!
Icing on the cake...appearance of dermatitis on my face since my surgery.
For different reasons I do relate as I have fibromyalgia. I find a load of soft cushions in my bed, to support any bits of me that need support. I also bundle up small blankets to put in crevices - under my hip when I’m on my side, or under my armpits etc. When my asthma is bad and I have to sleep sitting up I put cushions under my arms and a small one under my chin to keep my airway open. I avoid all caffeine from lunchtime as it takes 8 or 9 hours to leave your system. I should avoid screens but clearly I don’t! I find heat packs and ice packs work on different pains. I have an electric heat pad which is a godsend, and has a 90 minute timer on it so switches off in my sleep. I also have a fancy TENS machine that electrically interferes with the pain signals. It comes with special socks for my feet when they’re painful as well as the normal pads.
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