Letrozole Side Effects

[Surreyhillsgirl]

Hi All

I started my first acupuncture on Wednesday at my hospital’s Macmillan centre and so far haven’t had a night sweat since and my hot flushes the last two days have definitely been fewer. So onwards and upwards.

I have to take Letrozole for 10 years as my Breast cancer was high risk, so stopping it isn’t an option. xx

[Surreyhillsgirl]

Hi All

I started my first acupuncture on Wednesday at my hospital’s Macmillan centre and so far haven’t had a night sweat since and my hot flushes the last two days have definitely been fewer. 🙂So onwards and upwards.

I have to take Letrozole for 10 years as my Breast cancer was high risk, so stopping it isn’t an option. xx

[angabb54]

Hi Girls,

Back to the forum this week after nearly 7 weeks without Letrazole...

Has anyone suffered migraines and eye flickers after stopping this drug? I seem to have felt so much better since coming off them as previously mentioned. Can’t imagine it would be withdrawal after so much time...as my risks were small and the side effects so severe it was recommended I stop the therapy as it made little difference beacause low risks. It’s scary too.. trusting one person with their opinion but as a breast consultant she certainly was confident and forthright and had no issue with me stopping. Just to remain vigilant. 

xxx

[Corrina]

Hi anggabb54

I hope my consultant lets me stay off the Letrozole too as really does effect my quality of life.. but saying that would hate to get the cancer back sometimes its hard toknow what to do for the best  xx

[Corrina]

Thanks Nannyannie.I really dont want to go back on Letrozole and will have a discussio soon about the way forward for me. It may be if the risks are very small they may agree I dont need to take it. Ithink it has a lot to aswer for  as really effected my memory in a negative way ,caused me confusion which made me lose confidence and increase my . I have oesteopina in my spine and really worry that the Letrozole will make this worse and recently had a bit of chest pain  so worry that it may effect my heart as I have very mild thickening of the heart muscle. sometimes I think i should just do without the medication and hope for the best .. just adjust my diet lose weight and get plenty exercise and it might be a better way forward.

Thanks again for your reply xx

[pili pala]

Hi all, I can't remember what brand I was when I started on Letrozole last month but as previously mentioned on here, the side effects weren't pleasant at all!  I picked up a new prescription on Thursday, these are a different brand, Sardoz.  I know it is still early days but so far the hot/cold flushes are still definately there, day and night.  I am extremely tired and feel my eyes are getting worse again.  (I suffered badly with dry eyes and constant pain in them for about 3 weeks with previous brand and was just getting over it!)  I really hope I don't get a repeat of last month!  The light headedness and dizzy spells are hard to live with too.

I try to remind myself daily that I'm taking them for my own benefit and that they could save my life, but it is already getting hard to convince myself of this.  Please tell me it gets better.

[Nannyannie]

Hi Corina

i was off of letrozole accord brand for 6 weeks before I felt back to normal again. Am now on Exemestane, one and half weeks now. Been much better up till now. Keeping fingers crossed.

[Happyboobs2]

Hi, I also enjoyed the chat with the ladies..... after the insertion of the needles we sat around for about 40 minutes I think

, chatting..... all in the same ‘boat’

Also check out the other complimentary therapies while you are there. All tried and tested to help us along the way!

xx

[Surreyhillsgirl]

Hi pili pala,
I can really empathise as I’m also really tired in the day due to constant waking with night sweats. Got another 9 years 10 months. I’m going to give acupuncture a go at hospital Macmillan centre. x

[Angel62]

Hi anngab54 im pleased to hear you got some giid advice. I saw the oncoligist yesterday and asked if i coukd take sea kelp or biotin for my hair and the answer I got was 'don't know, never heard of them'. Never even offered to find out. Glad i only saw her once and don't need to see her again!
Angel62

[Angel62]

Hi Pili Pals which brand are you on. I was likevtgatvwith Cipla and since changing to Accord a week ago I feel like a different person. I also suffered with severe dry eyes and they put it down to the air conditioning in the room where I had the rafiotherapy daily. For the sweats I stopped drinking coffee and gone back to what I drink all day, hot water with lemon and the odd cup of tea as I read on a website coffee can make it worse.
What we go through eh. Hope it improves.
Angel62 x

[pili pala]

Hi, I've been on Letrozole for the last month now.  So far the side effects have been really bad.  Lack of sleep due to nights sweats and waking up hot and cold as I throw away and pull on the quilt is making me very tired.  I also suffered badly with dry eyes for about 3 weeks and could hardly keep them open.  Thankfully an emergency appointment at the opticians who supplied me with good strong eyedrops helped and it has finally cleared now.  For the past week or so though I have been feeling quite light headed and dizzy when doing the smallest of things.  I'm dreading what is ahead of me!  Anyone any idea how long the night sweats will last please?  I've only been on them a month and had enough already.  Have 9 years 11 months to go.

[Kate21]

Hi Angabb54, very interested to read your post about your discussion with your Consultant. Can I ask you were they referring to soy and seeds, or actual plants? Just a bit confused if it was plants/vegetables as I’m always being told I can’t eat too many vegetables! I do avoid soy for this reason but eat lots of veg. Also very interesting what said about organic! Thank you for posting Kxx

[Happyboobs2]

I don’t know if it is the same but I would give it a go if I were you.

x

[Surreyhillsgirl]

Hi,

Thanks for your reply. Is this the same as normal acupuncture? I’ve just been offered acupuncture but told it will be a weekly or fortnightly course. 

x

[angabb54]

Hi girls,

An update regarding my visit to the Breast Cancer consultant yesterday..I was on hormone therapy for two and half years

Ive not taken Letrazole since Sept 14th having suffered awful side effects, which became worse on the Cipra brand. 

I was told yesterday by a Consultant she  had no problem with me coming off Letrazole as my tumour was so tiny and contained in the breast they removed even though it tested positive for oestrogen dependent ( aggressive type of tumour)... My risks were carefully looked at and explained and although once having had this you are more at risk than the average woman, the risk was still very low..This begged the question why it was recommended in the first place and she indicated that it’s a belt and braces approach which is sometimes suggested. She did say that had she seen me at diagnosis she wouldn’t have put me on it as the risks were so low.

Anyway we also discussed diet and plant oestrogen..or phytoestrogens..I was confused at to whether these are safe for women who have had oestrogen dependent positive tumours. I was surprised to be told that these mimic our own body oestrogen....and therefore to be aware and not to maybe eat these foods excessively. Also importantly she recommended ORGANIC food, especially with, meat or dairy. The other factor is EXERCISE very important and to do something that raises the heart rate as well as other non aerobic exercises.

So, I shall get my once a year mammogram every January together with the physical check up..up the exercise Yoga is not enough!

She said to remain vigilant and any concerns to speak to them at any time.

I am still feeling headachey, sore and tired but the joint pains are no way as bad and I can get out of bed in the morning. I don’t feel 90 years old any more but I do feel battered and bruised by this entire experience!

xxx

[Happyboobs2]

Ps I had it through our local Cancer help unit.

[Happyboobs2]

Hi, yes I was the same as you re sweats at night. They settled but in the meantime had acupuncture in the ears, I think it helped. There was a lot of ladies in the same situation, after the course of about 8 sessions they would go periodically for top up sessions. I just did the 8 week course. I think it was called Nada. 

All the best.

xx

[Surreyhillsgirl]

Hi

I started Letrozole 2 months ago and am being woken several times a night with night sweats, I throw off duvet then wake feeling cold, and pull it back over me and then wake up so hot and sweaty. Also have hot flushes several times a day. I’m taking the accord brand. 

Has anyone found reflexology helpful or acupuncture?

[Angel62]

Totally agree Carolyn52 x

[Carolyn52]

I think it's about time the Cipra brand of letrozole was binned as we all have trouble with it ..I felt terrible on it ...I always have Accord brand too.
Xxx

[Angel62]

Hi ladies i have been taking letrozole for 4 months and as I stated earlier the side dffects in he last few weeks have been horrendous and I couldn't cope with the low mood. I dud a lot if research and asked my doctor to take me off Cipla and put me on Accord after my research on this forum. I know it's early days and only been taking accord brand since Wednesday but already feel like I'm back to my old self, no joint paint, no sweats, no depression, appetite back so onwards and upwards at last fingers crossed. I'm also sleeping like a log again but doing stretching exercises before bed and sleeping with my feet raised on a cushion....peeeeerfect
Angel62 x

[Conanthelibrarian]

Hi

i am finding that I get mottled skin and have a small reddened area on my (good) breast. I have been on Letrozole for just over the year and am getting appalling side effects. I’ve been referred back to the Breast Clinic tomorrow to get it checked but having had a recurrence on my bad side last year I am very worried.

Has anyone else experienced skin problems?

Anne

[Conanthelibrarian]

Hi

i am finding that I get mottled skin and have a small reddened area on my (good) breast. I have been on Letrozole for just over the year and am getting appalling side effects. I’v Been referred back to the Breast Clinic tomorrow to get it checked but having had a recurrence on my bad side last year I am very worried.

Has anyone else experienced skin problems?

Anne

[Corrina]

my memory is so bad so wander if im getting a brain tumour or the cancer has spread xxc                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          

[Corrina]

ive been off letrozole for a couple of weeks now. sill feeling extremily tired  and having memory problems going to go to see my GP next week to discuss. sometime having real bad swets in the night xx

[GrumpyTrout]

One of my happier discoveries is that dark chocolate is a good source of magnesium. I believe that most minerals and vitamins are better absorbed via food than as chemical supplements.

[Happyboobs2]

Hi, I am also the same age ish as you . I have taken Letrozole for over 2 years now. For the first couple of months I had heavy night sweats, absolutely drenching and also woke up very sluggish and with a headache.

I put a lot of that down to being dehydrated because of the sweats. After a couple of cups of tea and breakfast the headache went quite quickly.

These days I am still slow to get going in the mornings, it doesn’t matter much as I am retired but I feel for those ladies who work or have families to see to.

The joint pains in the early days were quite bad, throbbing ankles I remember.

I still have joint stiffness which obviously hurts but once I get going it helps although several times a week I resort to paracetamol or ibroprufen.

I don’t feel I could stop the Letrozole  as I want to give it my best shot but we are all different aren’t we?

Please read the threads about the different manufacturers of Letrozole. I believe a lot of ladies struggle with Cipla , that’s what I started with, I changed to Actavis and now am sticking with Accord.

Its a big learning curve!

All the best

xx

[angabb54]

Hi Jelsey2012,

Hope you are feeling ok after your mastectomy, I am same age and was put on Letrazole 2and a half years ago after my mastectomy.

I have stopped Letrazole until I see a Consultant next week as I have had some bad side effects mentioned in previous threads.

 I would say that’s exactly how it feels, unable to wake and get up normally, sluggish, headaches, tired, painful  joints etc. I felt exactly the same. It’s a weird feeling, not feeling yourself and as I described it feeling a bit ‘drugged’and heavy.

Advise you to keep tabs on the brand they are giving you, as I thought I was ok and got on with dealing with the SE as we women tend to do, I did suffer side effects, but it did get a lot worse after I was given Cipla brand....

Good luck xx

[Jelsey2012]

Hi - I am new to this. I had a mastectomy in August and have been on Letrozole for about a month. I do get aches in my joints but the worst for me is being unable to wake up in the mornings. Then feeling so headachy and sluggish. Is this normal? I am 63 so past menopause. Any advice welcome. 

[Nannyannie]

Hi Corina

i was on letrozole for 6 months. Started mid .feb. Taken off 6 weeks ago because of SA, the worst being the way it messed with my head. Severe depression anxiety and multiple panic attacks. Have now been put on exemestane. Took my first one today and keeping my fingers crossed that they suit me better. They are not the generic kind and looking up the price via GP prescribing was gob smacked to find they cost £88 per month. If they’re no good at that price nothing will be. Here’s hoping!! Xxx

[Kate21]

Hi again, I agree about animal oestrogen! Although I have never been much of a meat eater I gave it and dairy up when I got my diagnosis, apart from a little goats milk in my one or two cups of tea a day and an occasional roast lamb dinner, and I can't remember the last time I had one of those! Do think cow is the worst culprit from what I've read. Funny though, I have made many changes but giving up my cuppa was a step too far! Please let me know what you think when you've looked into it, be very interested to know xx 

[angabb54]

Hi Kate..I will definitely check that out..am thinking that animal oestrogen should be limited and that will include dairy I imagine. I will look into into it..seeing consultant on 23rd this month. It's been a month since I stopped taking  Letrazole. My husband has even said my driving is better ! Xx

[Kate21]

Hi Angabb54, please double check this but I looked into oestrogen and diet and believe plant oestrogens behave differently and are okay....as I said please don't just take my word for it but that is how I understood it x

[KayEM]

I can’t sleep at all since I started Letresole 4 months ago! I take Ambien but that’s not working now

[angabb54]

Hi girls..it's good to know that there are alternatives to taking Letrazole...I'm off it 3 weeks this Sunday and my side effects are definitely subsiding. I too had poor memory and concentration issues, but the worse thing was the awful fatigue and pain in joints..I felt as if I was dragging myself through life and everything was such an effort. Horrible...keep chins up. Xx

[Corrina]

Hi angabb54 I only stopped taking letrozole on Friday and already feeling much better  Im not as tired and my mood has improved ,I will have to make an appointment for a review of my medication in 5 wks . I would love it if they said my risk was s low they didnt think it was necessary to take it x

[Corrina]

Hi Rosarty dont know if you still come on here. I have just came back on the forum after having a break. I have now been on Letrozole about 8 months. I have been feeling very tired and falling asleep a lot and my mood has been very flat. also sometimes get night sweats and Im still having memory problems ..and find it hard to think straight sometimes which makes managing my job very difficult. I have recently been advised to come off the Letrozole to to see if my symptoms improve, I have only been off them since Friday and Im feeling better already. They have told me toring back up after I have been off them for 5 weeks and if Im feeeling better they will arrange an appointment for me to discuss a change of medication xx

[Alieck]

Hi Angabb, I think there are three main hormone therapy or aomatse inhibitors for post menopausal women being Anastrozole, exemestane and letrazole.  The minute I mentioned the side effects to the Oncologist  he told me that there were plenty of other options and gave me the exemestane instead.  So far the pain has eased and although not gone completely I am able to move about more freely.  Cross fingers.

[Helzie]

Although I posted in the thread that I've suffered no real side-effects from taking Letrozole (apart from gaining a few pounds-lost 11 during chemo!) I've just read on the US  BC site that it can cause heart problems. I'm aware that it can raise cholesterol and since the article didn't elaborate on the causes of the heart problems, am wondering if this is why? Has anyone else info' experience of this? Not too happy if this is the case, as heart before this deemed very good ie when I had the US pre-chemo.

[angabb54]

Hi Pip, Haha excellent that did make me smile!...interesting re magnesium as well as adcal. I've been taking Adcal AND magnesium citrate though not at the same time.  I can't say it's helped me much so far,  but maybe I'll try two tablets rather than one...they are rather large and can get a bit stuck! I now crush mine and add natural yogurt it's so much easier! It's just amazing how much you are not told isn't it..and no one seems to know much about food..(I think I'll qualify too and become a nutritional adviser! ) But I suppose that's the beauty of the Internet! Also feeling a bit cheesed off having checked out foods containing oestrogen in the hope I could perhaps cut out a few instead of taking Letrazole...guess what it's everything I love and have been happily chomping away on for years..all heathy foods too, chick peas, beans, lentils, carrots and.....yes you guessed PRUNES!....Grrrrrrrrr. Almost toooo much information on line I find. Enjoy the rest of your day.

Angi xx

[angabb54]

Hello Pip, yes we sound similar re diagnosis etc re bone density I am at risk as mother has Osteo in her back. I've been advised to take a bone building pill which having tried in the past also left me feeling wretched with joint pains...reviewing that at the moment. Last night on TV there seems to be new evidence that PRunes are efficacious for bone building! I'm also taking Adcal twice a day.. Guess what I had for breakfast...xx

[dancingpip]

Hi Angi - I think our situation is very similar - I am 63 and post menopausal so Tamoxifen was not suggested.  I also haven't heard of Alison's Exemestane but, in my understanding of the information on the eMC website, https://www.medicines.org.uk/emc/medicine/25862 Exemestane is usually given after 2-3 years of Tamoxifen so that's probably why it wouldn't have been offered to you or me. Do hope that the new tablet sorts out your aches and pains, Alison and that you are soon feeling an improvement - might be worth getting your vitamin D levels checked too.  Best wishes Pip

[angabb54]

Hi Alison, really interesting isn't it..such a small pill with so many horrid is effects..yes getting out of bed really uncomfortable, the stiffness and joint pain have been awful...my side effects already diminishing it's been two weeks since I took it. Await to see what the consultant says...not heard of that one. At my nurses visit she said I could try tamoxifen but I know that is for pre menopausal women and I am 62 and post...so unsure why it was even suggested!..good luck on new pill and let me know how you get on..xxAngi

[Alieck]

Hi Angabb, I have been on Letrazole for 9 months but the side effects over the last two months have been awful, with chronic back pain being the main problem. I have been unable to turn in bed and getting up was also a nightmare.  I spoke to my consultant who believed that it was the letrazole but did send me for a Bone Density scan also.  He said that there are plenty of other things instead of Letrazole and I am now taking Exemestane.  I have only just started talking this so will let you know if the side effects subdue.  Alison x

[dancingpip]

Hi Angi - Yes, researching diet and phytoestrogens is my way forward too. Luckily my local Tesco has recently turned 2 aisles over to 'free from' produce and the range of vegan cheeses and puds is amazing. Have you read 'Your Life in your Hands' by Jane Plant? She supported the medical team fighting her aggressive cancer by completely changing her lifestyle & diet - and lived a further 27 years to prove her point! You can buy a cheap second hand copy on-line from AbeBooks. It's worth a look. Your mastectomy surgery will have undoubtedly battered you about - I was offered wide local excision but, in the few days before the deed was done, I asked for an additional meeting with the surgeon to request that, if possible, I kept my nipple because she had been intending to remove that.   She said that decision would be made as she did the op.  I woke up to discover that she had managed it; it now points in a very quirky direction but has lots of character!  You will have gone through much more than I did so be kind to yourself and enjoy not taking the tablets. I'm sure you will soon be feeling so much better and would love to hear all your positive news in the future.    All good wishes Pip

[angabb54]

Hi and thank you for your response..it's good to hear that you are feeling better and able to leap out of bed..I've forgotten what that feels like!..great advice I shall go along with all the questions and also check out my predict figures...sounds like your diagnosis was quite similar to mine..very small tumour and no nodes involved..did you have a mastectomy too?..I've been off Letrazole now for just two weeks and still got joint pains and having trouble getting off to sleep..but I do feel less drugged and more alive I have to say!

My next task is to find out what foods are oestrogen rich and take them out of my diet, interesting about dairy.

especially as I've been trying to top up calcium for my bone density and been making my own natural yogurt!

I've not  had cows milk for years and oat milk is my preferred choice. Thanks for all the and info keep feeling good! XxAngi

[dancingpip]

Hi Angabb54 - Delighted to hear that you may be going letrozole-free. I actually typed up all my questions for my consultant and also took a friend with me to make sure that I didn't forget to ask/understand anything important. I also double checked that, even if drug free, I will still be seen annually by the oncologist and the mammogram team to reassure myself that they will stay on my case for the next couple of years. My tumour had been 2.7cms, 100% HER2 positive but with no lymph node involvement and the predict tool showed minimal long term benefit from taking the letrozole so it made sense to give it up and be free of the debilitating side effects. The half life of letrozole is quite short so you should be feeling an improvement within a couple of weeks. I stopped taking mine in July and 2 months later I am a new person....positively leaping out of bed in the morning and with no more incapacitating joint aches. I have also radically altered my diet - cutting out all dairy (to try to eliminate the growth hormones that are fed and injected into cattle) and I feel much better for hugely increasing my salad / fruit intake. My last problem of acid reflux (a side effect I believe was caused or certainly exacerbated by the letrozole and for which I refused to take omeprazole as prescribed by the hospital ENT consultant) has gone completely! I feel great and I do hope you'll be enjoying a similar improvement soon. I feel quite a rebel - messing up the pharmaceutical company's statistical data by becoming 'non compliant' but, hey, what the heck, I gave it a fair innings,over 3 years and suffered every side effect on the sheet, so I have earned my time off for good behaviour! Wishing you all the very best. Pip

[angabb54]

Sorry that last post was for

dancingpip...still getting used to this forum etc..xx