Letrozole

[claireglen]

Yes, the joint pains are unbearable. I'm into year 5 of hormone therapy now (1yr on letrozole, 3+ on anastrozole) and have taken a month off it every now & again which by end of month my joints are feeling less stiff. I wanted to stop it but my Dr said I need to be on it for 7yrs. So I've been changed onto Taxmoxifen now. Only been on it 2 wks no improvement yet. Meant to be less joint pain with it but side effects can be worse if you get them.

[claireglen]

I take an antihystamine (hayfever medicine) to stop the itching.  Do you have this there?  We can buy it in our supermarkets in the UK.

[freisa1216]

I know it's been three years ago. Just want to say I felt relieved knowing this itching I'm now having, after being on letrozole for 8 months, is a side effect of this drug. This itching plus the joint pains are just becoming unbearable. My next appointment with my onco in Thailand is end of this month. I Iive in Cambodia where cancer treatment is still very limited. I think I can't wait, I'll go and find a local skin doctor tomorrow for this itching.

[claireglen]

I think I had it a bit once. I believe Letrozole can awaken your ovaries, but if you start bleeding I think it's one of the symptoms you need to tell your Dr about. I think this is why they don't give it to pre menopausal women as they wouldn't be able to tell it's happening. Tell your Dr/Breast Care Nurse.

[ollisj6]

Hi Ladies just wondered if anyone else had experienced this i started on Letrozole 5 weeks ago and yes ive had the usual tropical moments but im now experiencing period like pains and slight cramping like im about to start a period please tell me after 11 years im not going to experience that again Love Judi xx

[claireglen]

Oh my goodness that does sound bad. You should go back to your Dr & they may change you onto something else. I'm starting on Anastrozole tomorrow. I notice that my car windows steam up even before I notice a hot flush coming on.

[cosmic69]

Hi claireglen,

At the moment I just try to cope as best I can. My best pal is a glass of freezing cold water with ice, and a "chillow", although that only lasts for about 90 mins so I only bring it out when I can't stand it any more. The horrible achy, almost electric-like, feeling when I'm transitioning from cold to hot is the worst bit at the moment. I go from having a cardi on and the heat up and holding every limb tight to my body, to flinging the cardi off and opening windows and going in the back garden to look at the frogspawn!

It's not good when I'm shopping either, supermarkets are ok because of the chilly bits, but ordinary department stores are a problem. I avoid them like the plague at the moment, because I have a "leaky" face I'm sure I look like a shoplifter. I've stood at the pay counter with sweat pouring down my face, (and yes, it is noticeable, my glasses steam up), and had strange looks from the staff, even been followed to the exit.

So there's just little chinks of light on the subject at the moment. Fortunately I'm a glass half full person.

I daren't wear makeup either, just a bit of lipstick and a bit of blusher because even my eyelids sweat. My skin's really clear, now, though!

Ah well, onwards and upwards!

Kind regards

[catokitty]

Thanks Pandorra. I have stocked up on Benecol fat free yoghurt and have bought a new pair of walking shoes xx

[pandorra1]

Have you tried benecol yoghurt or in drink form. The walking also should help. Good on you for starting, happy marching xxxxxx

[catokitty]

I had my cholesterol checked last week six weeks after starting letrozole and it has come back at 7. GP says it is not high enough to warrant starting a statin and advised me lose weight (I could do with losing 2 stone to get down to ideal weight) and get retested in 6 months. I feel a bit depressed and anxious about this as I was starting to feel back to normal 2 months after axillary clearance and now I have something else to stress about apart from standard BC stressing.  I have joined weight watchers and am walking for an hour every day so hopefully I will get the weight off. 

[claireglen]

Yes I get chills before getting hot & stay in bed till one comes on. I know now when I feel cold I'm due to get hot. Must be awful coming off HRT onto this as I describe it to people as the opposite of HRT. No tips I'm afraid, just grit your teeth & bear it, although I'm changing onto Anastrozole this week after being on Letrozole a yr cos of too many side effects.

[cosmic69]

Hi All!

I've had three months on Letrozole and am having not only tropical moments many times a day but intense chills when I'm not hot! During the chills my legs ache.

The chills are so bad in the morning I wait for a "hottie" so that I can get up. I am also doing "cold turkey" from HRT, which I had to take since the mid-nineties due to having a hysterectomy. It's hard to tell really if the "cold turkey" effect is continuing through the Letrozole treatment, or whether the side effects I have are just Letrozole based. I take six clonidine a day, three 1000mg evening primrose and sage-not a great difference really, maybe cut the symptoms by 30%. Any tips for my type of situation would be most welcome.

I also find that when I have a "hottie" my scars hurt due to the sweat.

Help!

[Matty2]

My GP has recommended I have cholesterol, liver and kidney function blood tests once a year. Had my first one and all was fine, 

Think it was a controll test first.

[hazelmary]

I finished Letrozole last year and I had my first ever cholesterol test in September and it was 6.8, not too sure whether it has always been high but anyway GP said it was ok at the moment and I will try to keep to a healthy diet so no more Jersey doulble cream for me!

[ollisj6]

Sorry my spelling meant  cholesterol  love judi x

[ollisj6]

Hi Ladies just another quick question has anyone had problems with choleserol whilst being on Letrozole i phoned my Mcmillan nurse and she said there has been a few incidences so am going to have mine checked Love Judi xx

[Matty2]

Hi

I get 2 months at a time

Newbies on anastrozole i recommend you note the brand you are given. I found symptons were  a lot less with one. 

I use Evening Primrose oil to ease the flush symptons, making sure I space them out (3 times a day) so I have one at same time as my anastrozole which I take about 10 pm.

Also take cod liver oil for bones (vit D) do not take calcium extras.

It suits me, my joints are still stiff, but I do not have much discomfort at present

B

[ollisj6]

Hi ladies just a quick question i have just looked in my new box of Letrozole and the dr has only prescribed 14 days worth surely i could have a month at a time the hospital prescribed a month when i first started it in March maybe my GP just didnt realise if not i will be on first name terms with the pharmacist!!!!! Love Judi xx

[Codiesue]

Morning Ladies, just come across this thread I have been taking Letrozole for 3 weeks now and so far not suffered with flushes. I do take it just before bed so not sure if that helps, however I am having really bad stiffness in my joints. I do have had a bad arthritic knee which needs replacing but had to put it on hold when BC reared its ugly head last September. Have had a really sore back too for last few days but had another WLE last thursday as had DCIS in margins so not sure if they have twisted me on table or something but it makes me shout out when it hits hard! Have always had a strong back so hope it is not the Letrozole as can't put up with this. I was given the Accord brand at the hospital but have asked the local pharmacist about side effects with different brands and she said it doesn't make a difference but it obviously does from reading these threads, we know how our bodies best. Love to all Sue xx

[Nenya]

Looks like I'd better weather the storm then, don't want to harm the effects from the Let , hey ho xxxxx

[Nenya]

Thank you xxx

[Lucy_BCC]

Hi Nenya
Here's a link to the BCC 'Menopausal symptoms' fact sheet which you may find helpful :

http://www2.breastcancercare.org.uk/sites/default/files/bcc18_menopausal_symptoms_web2014_0.pdf

Best wishes
Lucy BCC

[Nenya]

Yes Judi, i was hoping to avoid the tropical, moments, but they appear to be creeping on. I'm only one week in and taking it as I go to bed, but find I'm waking up being hot and having flipping bad dreams! I'm unsure whether to brave it through or take something. The only reason I chose Let was I thought it wouldn't be as bad as the tamoxifen for these symptoms.(plus the weight gain!) the first time round was bad enough I took something that was later withdrawn and that was the only thing really worked for me. I see people have tried sage and there's also black cohosh and liquorice. But it's hard to know what encourages oestrogen. I'm scared of halving anything with soya in now. Arghh what about Chinese and soy sauce it's a minefield :-/. Xxx

[ollisj6]

Hi Ladies wondered if anyone could recommend anything for hot flushes i started on Letrozole and boy im having some tropical moments some oncs say ok some dont like you taking anything Love Judi xxxxxx

[fyefye]

ps

My Breast surgeon recommended taking it just before bed so that menopuasal symtpoms are lessened as you sleep. As I sailed through menopause with nothing less than slight forgefultness. I wasn't prepared for skin rashes. hot flushes, joimt pain and sleeplessness. As I have posted previously, Ive found combined calcium amd vitamin D tablets have so far eliminated joint pain, As a hayfever sufferer, suddenly cetrizine has sorted out the rashes

All I have left is loss of appetite, hot flushes and sleep problems.

[fyefye]

I don't go to a slimming club but letrozole has lost me 3 stone  any any more I'll be severerely underwight.

[rosie14]

I have been taking femera since September last year. The nerve like pain I have in my right leg is getting worse. It doesn't matter what I do sit, lie walk it gives me grieve. It is always worse when I have walked the dog or had to stop to talk to someone. I don't know whether or not this is the femera or if it would have happened anyway. I am also,having Herceptin and I have had 4 infusions to date. I do feel nauseous when I get hungry. I have put on about half a stone since my surgery in July but I seem to be holding my own now by being careful. I lost 4 stone at SW. Prior to my diagnosis. I did loose a further half stone over the chemo and surgery period and my husband did say I was a bag of bones so I guess I needed to put the half stone back on!😏

[claireglen]

Even though I'm getting side effects I'm glad to have been on Letrozole rather than Tamoxifen as I read in the booklets on this site there are more side effects with Tamoxifen than Letrozole.  I also had a friend who got cancer of the womb because of being on Tamoxifen.  I haven't gained weight being on Letrozole but I have watched my weight and have maintained it by doing 5:2.

[Nenya]

Oh good grief I'm now in a right quandary, was going to plump for letrozole as gaining weight and thrombosis is a big worry for me. Now I read everyone's experiences, i'm cracking up! I've got to decide which by Monday 😞

[Matty2]

Hi Helen Rose

Which brand do you take. I lost 50 lbs before diagnosis and am finding it very difficult to maintain a suitable body weight now, though I am not 'ballooning'.

I read that weight gain can be a side effect.

beryl

[HelenRose]

Hello all I've been on Letrozole since Sept last year ...take it before bed so find side effects no longer affect me. I go to Slimming World and I'd lost 4 stone before i started on Letrozole and lost a further 1st 7lb since Sept. Do find i need to eat less food now I'm post menopause but that's the same with many of my friends. Do feel a bit achy (lower back and hips) but excercise & moving seems to help it. Determined to get to a healthy body weight (another stone to go) and exercise more as that puts me in a better mind set x Take care all xx

[Matty2]

Hi

 so interesting reading this

At first I had Accord brand from hospital, flushes were more like tropical downpours, terrible aches in my long bones needing pain killers all the time.

Repeat prescription and chemist gave me brand Teva - flushes are a lot less, not everyday and I find I can control them using Evening Primrose Oil capsules. I do get some wrist and ankle ache but do not need pain killers,

BUT last couple of weeks I am getting dreadful back ache and hip ache, OH sometimes has to help me to sit up in the morning. My problem is I am not sure if it is side effects or the fact that I am having to sleep with my upper body raised up (semi sitting) because I have had an implant or a combination of the 2. 

I am coming up to needing a repeat prescription and am wondering whether to request Teva again or ask for another different brand.

[Jean301050]

I too have arranged with pharmacist to have the same brand each month (Accord) I have been taking Letrozole for 12 months the side effects seem to be becoming less.  The head and joint pain have been horrendous.

[tigerpig]

Hi Ladies,

Ive been on Letrozole now for 3 years,i asked my local pharmacist to get me the same brand every month and they do.x

[jcon130]

hi Nicky

thanks for your input it is very helpful, i was considering stopping the letrozole but i am to frightened to do so.

the aches and pains are the worst for me, they have made me loose my Independence a little. 

After my yearly mammogram in September I am seeing my consultant  instead of the registrar to discuss  the side effects if there is still a problem.

thanks again Nicky

janetxxx

[nicky08]

Hi ladies
Just wanted to add my experiences over the years of hormone treatments. Unfortunately in 2008 I developed secondaries and after chemo I went onto Arimidex. I found the branded product fine but really suffered when, for costing reasons, my GP changed me to a generic brand. I can't remember the exact 'extra' side effects but they did cause me problems. I asked to go back onto the branded product and these all stopped. I didn't by the way get any aches and pains on this hormone treatment. 5 years on and after another lot of chemo I'm now on letrozole and boy am I feeling it 😞 Loads of aches and pains as described here and on other threads. I have noticed a difference with the brands Cipla so far being the worst culprit and Acoord the 'best' - a very loose term btw 😉 I am considering asking for the branded product to see if its the active ingredient causing the problems or just the binding agents etc. Whilst on generic Arimidex my GP did say it's not always the binding or coating ingredients that cause the extra side effects but can be the release mechanism being different. On the secondaries part of the forum we used to have some very active threads about hormone treatment but these seem to have disappeared recently as they are less active so I've come onto this part. Also although I don't have hot flushes now I did have them after my primary whilst on zoladex and tamoxifen and, as described on here, they do make you feel horrible, not just the flush itself but the bit beforehand, I remember it only too well. Take care and if it helps the hormone treatments do actually work from my experience - Arimidex held my mets stable for 5 years which is pretty good proof!
Nicky x

[claireglen]

Thanks. Will do. It'll be another month before I start the new drug.

[jcon130]

Hi claireglen 

so sorry to hear about your side effects, don't you think the drs and nurses are very you know go and get on with it, its only 5 years of discomfort and feeling like someone 100 thats how i feel on a daily basis.

well hope you feel better soon. Please let me know how you are on the new medication

Janet.xxx 

[claireglen]

I've been on it for nearly a year (April 14) & have felt like giving up, but then you hear about it coming back so keep persevering.  I went for a check up today & took a list of side effects with me:  aches & pains wake me up & limbs feel so heavy.  I'm Ok if I keep moving but if I stop it's like artheritus.  I did wonder if the different makes affected me. I've felt better this month, back on original brand Accord.  Pharmacy don't care they just say they give out what they get in.  I had 2 different makes in one prescription.  The nausea has gone this last month but I've started getting dizzy.  I start a different brand again tomorrow, not looking forward to that.  Some of the hot flushes start with a feeling of unease (don't know what to do with myself), then a pain/ache in abdomen & by time hot flush comes on it's a relief.  A general feeling of just not feeling well overall.  Hospital today said they'd move me onto Arimedex & are notifying GP.  Doc said there seem to be less side effects with it than Letrozole which they always try first.  I suspect it's cheaper.  Doc reckoned I'd still have the aches & pains but they would go once I finish it in 5 years.

[jcon130]

Hi, sorry to hear your having this side effect, I have been on letrozole  for just over a year now, I have had awful side effects, hot flushes, my gp gave me a drug called gabapentin which is not for hot flushes but she says they have been found to work, they have eased them.

The joint pain has been awful, just take painkillers, weight gain bloody horrible, lol....  

The new one on me is the itchy bite like spots which I have, and sugar cravings, I thought I was going mad as I haven't got a sweet tooth normally.

It is interesting and informative to hear other ladies experiences.

I have tried lots of brands  of letrozole but never femara, I think I will talk to my gp again and ask her for femara.

Thanks to everyone, hope my input has been helpful.

Janet xx

[Dzyre]

Hi

I have exactly the same problem as you with the itchy rash and "bite like spots"  I do know I have problems with diff brands of the Letrozole.  Teva brand suits me best - just aching bones and rotting teeth weight gain but skin is not so sore with Teva.  My nurse practioner was going to prescribe me femara till she looked at the price of them and said that she wouldn't be able to prescribe it without doctors permission.  I try not to see doctor as its a practice with several doctors and I feel I am just repeating things over and over to diff doctors.  I do take anti histamine to help with the itching.

I don't know about other people but I have a really bad craving so sweet things, so much so I can miss a meal and eat chocolate instead.  (so would be interested if anyone else has this "side effect" )

[catokitty]

I am so sorry you are having such a horrible time. According to booklet my onc gave me skin rash is a less common side effect as is depression. Have you seen G P about the rash? One thing I have noticed is my G P takes me more seriously now since BC and if I have anything I' m worried about I see her. I hardly saw GP  before and on the rare occasions I did felt they were a bit dismissive with me.  I do hope things get better for you. I have just started taking Letrozole taking Cipla and so far only had a slight headachy feeling and feeling bad tempered. All the best xx

[dusky]

I've been taken this since dec 14 found first month was fine took with my antidepressant no problem . Second month got different brand then all hell broke out rash to lower part and upper part I'm back on cipla brand but still suffering from itchy spots hot flushes and general feeling not well . Also changed brand on antis thought this may have caused it had great day on Tuesday best I've felt for months but back to feeling unwell again. I'm so down I could cry my eyes out. I seem to itch worse at night with small red spots I thought they look like bites to me anyone else having this trouble thanks for reading xx