Letrozole - again!

[noots]

Hi everyone
I know Letrozole and all have been discussed numerous times, and it’s been useful to read a lot of those threads.

I started it recently, reluctantly - I had HER+ etc lump, removed in Jan along with full axilla clearance (found in 3 nodes, including one at Level 3). 6 chemo, 15 radio. Along with a massive bereavement just before chemo, I’d had enough of feeling rubbish and refused to take anything more until I felt better - I couldn’t face feeling ill any more. Plus, I really want to get fit for work - I’d had issues with albumin levels and weakness and oedema, and there was a time I could barely walk. So it’s taking a while to build back up from that, to the point where I can do a fairly physical job.

So, I’m about a week in on the Letrozole. I’m taking it at night, to try to alleviate the fatigue and help me sleep - and I am sleeping well, which is unusual!

So far, no pain, which is good.

But - I suspect it’s causing migraines (which I have a history of, but had been free from since chemo ended), and the fatigue is awful. It’s already getting in the way of me doing things I need to be doing.

My question is (as well as wanting to hear / happy to listen to anyone’s experiences), does this echo with anyone else’s experiences? I see my oncologist in a couple of weeks, which is not usual in my area - it’s purely because I’d refused to take the drug that I get the appointment, I think.

I also plan to talk to him about cholesterol, as mine is dodgy anyway; and weight, as I desperately need to lose a lot and I gather that Letrozole can cause gain?

Thanks for all and any feedback, comments, thoughts etc. xx

[naughty_boob]

Hi @noots

I’ve been on Letrozole for 11 months and it’s affecting my sleep! Funny how it affects us all differently. It wakes me up with hot flushes and urge incontinence, I tried Fezolinetant which took away the flushes but not the urge, it was private prescription and became cost prohibitive. I’m now on Oxybutynin, 2 weeks in and still waiting for it to work, was told 4-6 weeks.

I’m so glad yours is making you sleep, I take at night, tried a couple of different brands, change the time of taking back 1 hour at a time to middday, then morning with Jo difference to sleep.

As far as cholesterol, it was on my leaflet that it needed monitoring so I had to chase the GP to do the blood test. Mine had risen since the last time I was tested 5/6 years ago but still within normal for now. I keep an eye on my diet to try to keep within normal range. GP said they’d do a yearly blood test and if it’s high I would be put on statins. I am reluctant to take more medication to compensate for the Letrozole!

[noots]

@naughty_boob thank you for replying.
I definitely wouldn’t take statins - even the newer ones that apparently have fewer side effects.
Cholesterol is a family issue, and I know mine is high already, but mostly the good type so I’m not worried atm.
Losing weight - and thus a healthier diet - is important for me anyway, so I’m hoping that will help the cholesterol, but it won’t if it’s the Letrozole causing the issues.

Hot flushes are driving me potty, too - jumper on, jumper off… l duvet on, duvet off…

Also just a had a proper sob session, and I can live without more of those, too!

We shall see, hey.
Xxx

[naughty_boob]

@noots. I get you with the on and off with clothes and duvet!

Sorry you’ve had a bit of a down day, maybe a call to one of the BCN nurses just for a chat might help.

• Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.

[elsie1]

@noots I’m taking Anastrozole and had acupuncture (recommended by oncologist) from a local charity for the hot flushes. It worked almost instantly and 6 months later I am still almost completely free of hot flashes

[naughty_boob]

Would be nice if that was available at all trusts. I was offered reflexology but it didn’t help

Might have to look for acupuncture locally and pay for it if it works that well. Can you say how many treatments you had?

[elsie1]

@naughty_boob I had 6 sessions but as the acupuncture sorted the hot flushes after 2 sessions she then worked on helping sleep and painful joints with less success.
I was thinking may need ‘top up’ sessions privately but haven’t needed to so far (6 months)

[naughty_boob]

Thanks @elsie1

[noots]

@elsie1 that sounds great! I have some sage, but not tried it yet.

[moobloo]

Hi @noots, my story sounds very similar to yours. I’ve been on Letrozole for a year now (need it for 10 yrs)! It’s not good news I’m afraid, I can manage cos I’ve taken early retirement as there’s no way I could work with these side effects. So, it started with heavy, aching legs, painful knees (and now elbows and hands are painful too). Insomnia is awful but again I can deal with it cos I don’t have to get up in the mornings! Often still awake at 3am! It’s given me high blood pressure and high cholesterol too. Brain fog is a big problem- some days I can barely remember my own name! Hair thinning continues-have lost my eyelashes 3 times since getting them back after chemo. Bone thinning too as I fell over and fractured my pelvis- I’m only 56 btw. To sum it all up, I feel more like 86 but I’m not giving up and go walking every day, joined a gym and do Pilates. My legs ache if I do lots or do nothing so might as well keep going. Fatigue is getting worse too but that’s probably from the Abemaciclib- just have to pace myself. Sorry there’s no good news. Hope u can manage on Letrozole. Lots of people swap and change but I’ve decided just to carry on. Take care x

[noots]

@moobloo oh my goodness that sounds awful!
I think you’re amazing, coping with it, I really do.

There’s no way I could cope with all that. I’m just a couple of years younger, and I’m itching to get back to work and be free of the after effects of the treatment so far.

I’ve already decided that Id rather be able to enjoy life now, rather than have it restricted (physically or due to mental health), by taking something that might or might not prevent something that might or might not happen anyway.
I mean, if I knew that I wouldn’t get a recurrence on the drug, and I would without it… well fair enough. Don’t get me wrong, I don’t want it to come back, but 10 years of side effects like you describe… no, I just can’t. Mind, I’ve no desire to live to a ripe old age, either!

I hope things do improve for you, but meantime, keep going, you’re awesome! X

[naughty_boob]

@moobloo im 55 and took redundancy with early retirement. I’m hoping I can re enter the workforce if side effects settle.

You are not alone.

[moobloo]

Aww thanks for your kind words. Again, I can only cope as I don’t have to work! I hope my experience on Letrozole help make your decision easier about whether to take it or not x

[noots]

I maybe could manage without going back to work, but not mentally. Long story, but I learned that I need work.

I don’t think I’m going to take it.

I really appreciate you sharing, and I hope it does get better for you.

[JoanneN]

Hello @noots

Just in regards to migraines I had a lot of these in my late 30s and my 40s and they were most common in the 10 days before the start of my periods - which were pretty awful as well .I can’t remember where the advice came from but I started taking a daily Magnesium supplement to help prevent migraines and it did seem to cut down the frequency of them a bit . It’s also good for joints / bones and can help the mood a little . It’s not a miracle cure for anything but might help a bit . Since I’ve been post- menopausal I don’t get many though still have to be a bit careful with certain foods . Xx

[Susanmanchester]

I have no side effects been taking 5 years plus walk miles every week sleep fine no pain whatsoever. I think these threads are really unhelpful it’s not a great idea to put women off taking a life saving drug . And in the years I have been religiously taking it I have seen it over and over again . A lot of us are just fine and might not even be here without it . Another 5 years for me it’s a game changer don’t gamble with your life take the meds they are given for a reason

[Tili]

Dear Susanmanchester,

This is very positive news, how well you are doing on Letrozole, however this is not same for everyone, some ladies including myself have really struggled with this medication. Unfortunately I also had to stop, but like you my dear friend has done extremely well on it.

Wishing everyone health and happiness ahead.

Hugs Tili

[noots]

@JoanneN thank you. I usually take magnesium- well, when I don’t forget! - for restless legs. Didn’t know about the migraines, though, so I’ll try to add it to the daily meds pile!

[noots]

@Susanmanchester thank you, it is good to hear that it can be problem-free.
I don’t see it as a life-saving drug, I guess, because it isn’t guaranteed to prevent something. Recurrence might happen anyway - or it might not, anyway.
A different cancer might happen, anyway.
I have too much personal experience of quality of life being so, so important for side-effects not to matter.

But I will give it a try, because if I’m lucky like you, it won’t hurt!

[JoanneN]

I also forget sometimes and if I manage to miss it 2 days in a row there’s a definite difference . Xx