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LETROZOLE SIDE EFFECTS; PLEASE HELP

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Bella,

 

I couldn't agree with you more re-the side effects one experiences with Letrozole depend on how far into the menopause they are and whether they were on HRT. I've never been on HRT and was confirmed "post menopaussal" when I started Letrozole. I probably had very little estrogen in my body when I started on Letrozole. I haven't had a hot flash in months if not years and if I do get any now, they are short-lived (over within 20 seconds)-it's more like a "wave" of heat, but nothing my A/C (in my car), or a hand held fan can't help with.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Pippi-sorry I'm so late replying-I take my Letrozole in the morning-for the first day or two I took it right after my breakfast but then wanted to experiment with taking it *not* with food and I've been fine. I've always been a coffee drinker and tend to take it just before or with my morning coffee. Everyone has different experiences with certain side effects...I had very mild nausea for a few days but I've also started a new BP med (2 days prior to the Letrozole) so wasn't sure which drug was causing my nausea but it was so low-level (2/10) and I now don't experience the nausea. Sometimes our bodies just need to get used to a new drug in our system and some of the side effects you *may* have in the first few days may dissipate, *or* you may habituate (get used to them). xxxx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Tinkabell,

 

I just thought I'd throw my two-penneth in because I, too, am on Letrozole (about 2 weeks in) and luckily, bar the occasional joint pain (on a scale from 0-10 it's a 5-6 but duration=2/10 so very tolerable), I just wanted to pick up on:

 

"Now the side effects have stepped up, but surely this is confirmation that the drug is working properly".

 

No, this is not necessarily the case, because this would also suggest that women who are not experiencing side effects (SE) are not gaining the full benefit of the drug, i.e., the drug isn't working.

 

It's a myth to think that side effects mean a drug is working and the lack of SE's mean it isn't. I just thought I'd point that out. Some women have SE's and others don't but this is not an indication of whether the drug is working. You'd want to have further ultrasound scans etc. to check whether the cancer is shrinking. I understand that Letrozole has been shown to shrink cancer (not all cancers, but some, i.e., ductal ones if I'm not mistaken) and a scan would be the way to assess whether the drug is working-not the side effects.

xxx

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

To add to my last post:

I should say that the services offered by MacMillan nurses and this Cancer Care Forum are complementary. They are BOTH useful but in different ways.
Your proposed method of taking the tablets is quite unusual and perhaps requires an answer from someone closer to your particular circumstances.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Tinkabell
I understand the difficulties you have in getting answers to your queries.
When I was first registered at my local Breast Cancer clinic I was assigned to a MacMillan nurse and given her contact details. I called her once or twice by phone with "minor" queries. She couldn't necessarily answer straight away but she was very useful in talking me through what was puzzling me. Do you have a similar service? It is SO useful being able to talk to a sympathetic and understanding person who is willing to go through answers with you.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Appletree,

Firstly, many thanks for the info regarding the size of the tablet.  It did not occur to me about the extra packaging.  That's a relief and very helpful.

 

Your comments re. website information contradiction makes sense also.  Yes,I could make an appointment to see the oncologist but the clinic at my local hospital has been moved to another hospital across the other side of the city.  This hospital is huge and I hate to "take a seat" for an hour waiting time.  It is at least a two week wait to get a GP appointment just for advice when dozens of patients want appointments more urgently than me

 Another thing, a lot of  the cancer forum threads are from ladies whose oncologists  have told them to take a month or more holiday from taking  it.  Or they go away on holiday and do not take it until they return after three weeks or so (and dread starting it again)

 

 

I will do my very best with this new drug. 

Best wishes

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Tinkabell

 

I am in the UK too, and am fully aware it is possible for breast cancer patients to obtain information and advice from their Oncologist and GP by making appointments. I do this myself. Your BCN can assist you to do this. It is far better than relying on 'advice' from Internet sites and forums, which can be seriously flawed.

 

As for research on the Internet, reputable sources of information such as Breast Cancer Care, Macmillan and Cancer Research UK, all advise patients to keep to the full dose of endocrine therapy unless otherwise advised by their Oncologist. They advise against lowering the dose.

 

If a patient has forgotten a dose of their AI, Breast Cancer Care and Macmillan booklets advise not to take an extra pill because some of the previous dose is still in their system and they would than have too much of the drug, which has its own dangers. This advice does not translate into 'it's all right to lower your prescription and have your pill on alternate days'. They are simply saying that if you miss a dose, it is better to wait for the next time it's due and be slightly low on the drug for a few hours, rather than overdosing. They don't mean you can keep skipping doses; they all say that to do that can decrease the protection given to you by the drug. They strongly advise that you should keep to the stated dose, unless otherwise advised by your Oncologist or GP.

 

There are many Internet sites which hand out misinformation and are not reliable. On researching online, it is advisable to keep to the NHS, the Lancet, NICE and the BMJ for searches.

 

All the best.

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Appletree

 

After reading the information booklet given to me by the BCN, I did hours of research both on anastrozole before taking it, and also on letrozole. 

 

Below is the thread I posted re. anastrozole side effects.

"After having two lumpectomy ops. I have been taking anastrozole for five months. 

Hours of research revealed it is a very powerful drug and very effective at blocking estrogen production.  Also that if a dose is missed, there is sufficient in your system from the day before. This is also stated in a booklet the hospital breast care nurse gave me.

The website said that estrogen should be controlled not squashed and that 1mg  on Mon/Wed/Fri  would be sufficient.  

 I started with 3 to 4 tabs. a week for one month, then tried 2 days with and 1 day without.  Now the side effects have stepped up, but surely this is confirmation that the drug is working properly. 

 The doctors will simply prescribe 1 mg. a day to one and all, as it would be time consuming to say start slowly and build up the dose gradually. but  I thought it was worth a try"

 

Here in the UK. we do not have oncologists to informally chat to.  We only have the BCN.  We cannot informally chat to the GP either.They have not got the time or the know-how.  I always research on-line any new drugs given by the hospital or GP before taking it.

Regards

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Tinkabell

 

You have specified a rather unusual regimen for taking Letrozole. Do you mind my asking, is this an approach advised by your Oncologist or BCN, or is it something you have arrived at yourself?

 

It is very important to take medications in the manner we are advised, or they might not be effective at all. Different drugs will have different doses to allow for differences in their chemical nature. Some medications need more packing in the tablet than others, so will be administered at what appears to be a higher dose. It doesn't mean that a drug given at a higher dose is going to be more powerful or have worse side effects than one at a lower dose. You might find it helpful to ask your pharmacist about this - I'm sure they can put your mind at rest. 

 

The half-life of a drug is the time required for the concentration or amount of drug in the body to be reduced by one half. It doesn't mean there is enough in your system to skip doses, in fact it is very unwise to do this unless advised by the doctor supervising you. (Forgive me if you are acting on your Onc's advice.) For some drugs to be effective, it is important to maintain a particular level in your system.

 

You do need professional, expert advice on this. Your problems with Anastrozole could relate, at least in part, to the effects of oestrogen depletion and not purely to the drug itself. Perhaps a specialised pharmacist could help you with this.

 

All the best

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Happy Monday Rosie,

 

was as wondering how your doing, just stopped taking the dreaded Letrozole after almost 3 years, feeling so much better after 3 weeks a little frightening at time asking myself am I doing the right thing ?? 

 

Wishing you you lots of luck Tili x

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello everyone,

I am starting on letrozole this week after stopping anastrozole  (Arimidex) after six months because of evil side effects.  I am going to take it every other day for two weeks, then I will take it two days then miss a day for two weeks and so on.  

I did   this with anastrozole but I could not  manage 1mg a day of it.  All the side effects kicked in big time after two months of slight s/e's. Really awful time.  

 

Letrozole has a "half-life" of two days, meaning I can safely miss a dose because there is enough in my system from the day before.  According to the little booklet the breast nurse gave me, letrozole can diminish or even shrink existing tumours.  

 

I am worried about the dose being 2.5 mg whereas anastrozole was only 1 mg.  Can anyone help me on this please?   Is it a more powerful drug which can turn out to be worse than the anastrozole (anasty tablet).

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello Pippi

Going back to your first question, I agree with Loolarch and Sandra49.  Most people are drawn to a web-site like this once things have started to go wrong, so the comments are bound to be more negative.  You are unusual in thinking ahead and looking for the pros and cons.

I took Letrozole for about two and half years before I realised I was in trouble.  During that time, I was regularly asked how I was getting on with Letrozole and I thought I was OK.  It is difficult to tell the side effects of the drug from the effects of the menopause.  I was 69 when I started on Letrozole, so way past the menopause.  I only gradually realised that I was getting more cramps in different places and feeling in more of a fog than before. Was this menopause? was this ageing? 

Two things made me question the drug. I developed glaucoma and was worried there could be a connection with the Letrozole. The cancer specialist went through the assessment tool with me. The connection with eye problems is possibly not really there.  Also, it seems the preventative effect of Letrozole is highest in the early years and decreases as time goes on. 

The other factor which un-nerved me was that I began to lose weight without really trying.  You might have thought I would welcome this, but after a few weeks and a few kilos, I got scared. I have put back some weight now I have stopped the Letrozole.  I think I have lost muscle mass, but sadly not the fat.  I continue to take the alendronic acid and combined vitamin D/calcium to prevent against incipient osteoporosis. I still get annual mammograms.

This forum has been very useful.  It has put my feelings about the side effects into perspective. It is all very individual.  However, the drug is a very powerful one, and I would have benefitted from more explanation on how to cope with its effects from the beginning. I signed consent forms for surgery and radiotherapy, but nothing similar for the drug regime.

Pippi - I wish you the best in your treatment. It is good to hear what others have to say, but ultimately the decisions have to be your own.  Good luck.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thanks
Yes think I will invest in some
😊
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi pippi1969
No I take VitD & Calcium to counter the effects of Letrozole. So for bone strength etc. Feeling fine on Letrozole though, just took time to decide which time of the day was best to take the different tablets.
Take care xx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Did you mean you take VitD and Calcium to prevent nausea from the Letrozole??
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, I've been taking Leyrozole for over 6 weeks and am fine. I take it just before I go to bed. Still wake up with hot flushes a couple of times but no other side effects so far. I also take VitD after breakfast and Calcium after evening meal, as they can make you feel nauseous. Good luck xx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Great thanks I will start tomorrow night then 😊
Highlighted
Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi pippi
It seems to be best taken in the evening, with food, which prevents the nausea.
Sue xx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you Bella99 I will just see how it goes hopefully I won't have too severe side effects.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Well I'm starting my Letrozole tomorrow is it better to take them at night or is there a better time when to take it?
Thanks
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Loolarch yes never thought that. The people who do alright won't post on here as they feel ok and it is usually when people have problems that they post here for support.
Will start mine tomorrow 😊
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you Ali49 that was really helpful as I was quite worried about taking it. Yes I will try it out and see what happens 😊
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Pippi, it is all individual i think. I have never had nausea with letrozole. I take it every evening with my tea. The bone pain is my weakness i think as i had it through chemo too. I dont have hot flushes either. Dint be put off just give it a good go xc
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Pippi

 

I've been on Letrozole for three months now (two different brands so far, and no difference between them) and side effects have been very little problem. I do get hot flushes but no worse than I experienced during menopause. I think Its likely that people who are having little or no problem are probably not even looking at this forum, let alone posting, so you might get a biased view of the likelihood of problems. 

 

Good luck xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Side effects have got a bit better on letrozole.  I also think the impact is very dependent on how far into the menopause that you are.  I think I also suffered horrible symptoms at the beginning because before being diagnosed with breast cancer i had been on HRT for two years.  So the combination of losing HRT and a drug that takes away oestogen was pretty grim.  I did also get bladder infections at the beginning.  Symptoms have got better over time although there is an ongoing impact on my bones and I am do get more sweaty and tired (though tiredness could also be down to the surgery).  As I have mentioned in an earlier post I do not think I will be on Letrozole for 5 years but might be on the drug for 2 years (which I understand is the most productive time).  So you may be lucky and you may not get many symptoms or they may be controllable.  Whether you stay on the drug is a different matter - and that I am sure will depend on your risk factors and the impact of the side effects.

 

All the best.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi I have been prescribed Letrozole today but not started them yet. But reading on here it sounds like this drug is going to give me a or of pain, fatigue and possibly nausea. For me the nausea would be the worse. Is there anybody o here that actually can say that they are managing ok with the side effects or the side effects got a lot better after some time? Bit worried now really...
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thanks for replies. I am on the accord brand and dont want to change! I will ploigh on and try to get through! I will ask my onc about predict though. I have signed up for couch to 5k starting tonight so will see how that goes too and i will remind myself to drink more as that is something i do forget. Goid luck ladies xc
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Ive only been on letrozole for 3 weeks but I'm already taking carbimazole for overactive thyroid. This has the same side effects so now I'm getting double se. I'm hoping it will settle down like the carb did (been on these 10months)

I try to go for a short walk each day and drink plenty of water. I'm also using muscle rub on knees, calfs and ankles and toes this helps. I take 2 naproxen before bed too, it's manageable but when I get new prescription from docs I'm asking for Accord brand as the hospital have me Crescent.

I've already asked the pharmacy if they can supply it and theve made a note on my record.

I'm almost 61 and thought I'd got past all the hot flushes etc but theve kicked in again. Got a mini fan to use again. Also if my joints get cold that makes them worse or if I'm not very active. I sit and craft a lot but the walks help .

Just hoping things settle down eventually. Going for my planning session on the 2nd Oct for radiotherapy. All done for xmas and feeling better,
Fingers crossed.

Susan x
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have also been stuggling with Letrozole which I started to take at the end of May. 

 

I had a second opinion from a different oncologist about the need to take the drug and how long.  She also went through the NHS predict tool about reoccurence. Basically Letrozole is about protection from reoccurence.  You are entitled to get a second opinion which I found really helpful

 

I have also returned to work and I am struggling with tiredness and pain in my joints.  I will be taking a view going forward iwhether taking the drug is tolerable to my quality of life.  I may also ask to try another drug in the Letrozole family.  I will also consider whether I take the drug for the full five years.  I doubt whether I will as I have a low risk of reoccurance although the drug is protection for the longer term (15-20 years).  Apparently the drug does the most good in the first two years (they say 2-3).  The predict tool helped me really see my risk and allows me to think about my risk of staying on and coming off the drug.  Infact even though i am low risk I am prepared to stay on with the drug and have the side effects for the time being.

 

So you might want to get a second opinion including using the predict tool of your own circumstances.

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Morning Ali
Letrozole is very challenging that's for sure! I've been on it almost 2 years now, and I struggle with fatigue, bone pain and muscle aches. Sadly, I don't think it's possible to go back to the way we were before bc. Hormone therapy gives us a new normal.
What I would say is try different brands. I'm on accord, which seems to be one of the better ones. I had crescent once, and that was awful. Also, try taking the pill in the evening, with food. This seems to help.
I don't have any magic answers for you ( or for me!)I'm sorry to say. But personally I would rather the side effects, than risk not taking it.
Best wishes
Sue xx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello all, i had grade 2, stage 1 idc, er+ 5/8 and her2+. This came 1 year after being treated for DCIS, a lumpectome and 15 shots of radio.

I finished chemo in january and had a masectomy in feb. I started letrozole in april and have had 13 herceptin with 5 left to have.

Within days of starting letrozole i could barely walk with the pain in my knees. However it did improve after about 10 days.

5 months on though i feel wrecked. I am constantly tired, my feet and ankles ache and my legs feel like lead. By far the worst thing at the moment though is my shoulder pain. My right shoulder, surgery side, is the worst. I cant reach up, i am struggling to put my bra on, if i reach sideways it feels like my shoulder is broken! I cry all the time!

I told my onc nurse and she said its 'disappointing' that i'm not exercising so to go swimming and come back in a month!

People think chemo is over and we are ok but i said to my husband today that i think i feel worse now than i did when i was having chemo! Is that awful to say?

I am totally fed up of moaning!

I returned to my teaching job full time in Septembet and i am wondering how long i can keep going. I am trying to keep a brave face on!

I am going to try pilates this week and find a swimming pool that i can walk into and not go down and up steps to get in and out of!
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Try Planctur 39 for the hair. I use the shampoo, conditioner and also the daily tonic.. I think it has made a real difference to mine x
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I started running in Jaunuary and I've been on letrozole for 1 year, switching to Accord brand a few months ago as Cipla was horrendous. I have now started to get severe hip pain on right side only. Had an MRI last week as they have found a cyst in my right thigh but doesn't look sinister. They have just tried changing to another brand when the pain stopped for now. I say that it's the medication and attacks one joint after another. Is anyone else having the same problems? Oh and the depression and heavy head is horrendous and making life miserable. With the hip problem I have had to stop running for now, which isn't helping with the depression.......one powerful little drug 😥
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

 

I am in exactly the same position as you and on the same drugs. How are you getting on now?

 

Anne

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Suemolly1

 

Interested to hear that the change of brand of the Letrozole made a positive difference for you. 

 

It is indeed a very powerful drug with a variety of side effects (none of which seem to be good).  I would be interested to know what vision problems you have been experiencing.  Since you are also suffering migraines, it sounds as if the vision is associated with that. 

 

I have experienced problems in my field of vision and have been diagnosed with glaucoma - this is apparently a slowly developing condition, yet it developed within 2 years' of my starting Letrozole.  I suspect a connection with the Letrozole, but since few patients seem to report vision problems, it is difficult to establish if this might be the case. I hope that your vision problems, like the migraines, are only temporary.

 

My vision problems however, are not temporary.  I am now suffering daily soreness and occasional clouded vision as a result of the glaucoma drops.  I have to have regular eye tests to continue to be able to drive. In other words, my independence is under threat.   It is ironic that my current discomfort may be the result of addressing the side effects of the cancer drug.  Especially so since I was assured after the operation to remove what was a very small grade 1 cancer that I no longer had any cancer and that the drug was just to prevent the possibility of it recurring.  

 

I have stopped taking Letrozole but I think I may have suffered permanent damage - not only to the eyes (which may be coincidental) but also to my bones, as the CT scans show I have the beginnings of osteoporosis.  Yet there was no discussion of the side effects of this drug - it was just prescribed routinely.

 

These posts show that there are many reported side effects and many women who are having to endure them.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, was on the Accord brand of Letrozole for 6 months.  The first two months, I was fine and suddenly I couldn't walk and the pain in hips and back unbearable.  My doctor and oncologist kindly switched me to Femera, the original brand, and the difference was unbelieve.  I am back to walking the moors again and no pain in hips and back. 

 

Not all plain sailing though - I am suffering terribly with vision problems, migraine and low mood.

 

I hope you feel lots better soon.  it seems a long journey and not what we all expected.  Take Care. xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi 

Just letting you know that youre not the only one ,extreme side effects on my part ,was told to continnue ,and changed medication 3 times, some ,it seems have no problems,  i have had many if not all bad or disastrous side effects. Not living anymore, stopped  two weeks ago and now i can get out of bed...well see how it goes...

know that its a difficult choice to go against docs recomendation but iv stopped crying and can now walk 20 min which i was not capable of doing since LETROZOLE .

SO living with the thought of getting cancer again but also getting out of bed

What can i do but try to stay positive

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello,

 Just letting you know that Iv been told Im overreacting to how Im feeling on these hormonal drugs! Took Tamoxiphene  had to stop  i couldnt lift  a box of kleenex after 7months . Changed to Letrozole and pain was awful ,eyes went bad, abdominal cramps, bad headaches ,Depression ,panic atacks ,and much more...

Doc told me to change to Teva exemestane.. something , went into a humain zombie could not get out of bed after 30 pills, looking at walls ang not getting up ,not able to talk, wanting to go to bed when I wake up !  Im an old teacher!!! . Ive been told BC would come back if Idont take the drugs.

I understand ,but dying with a pill... chimo and masectomy and radiation were much eazier. Love my job but cant even do 25 min  of activities like walking and talking.so stopped taking pills 2 weeks ago, Ican now lift a kleenex box and no longer take two hands to lift a coffee mug. Must be getting better. Have a wonderful partner who helps ,he didnt and still doesnt know how to help, he doesnt want to loose me but see how difficult  it is for me. I do want to live ,somehow those medications are killing me. Still Im stopping the drugs.

Hope to have helped a few readers in showing that youre not alone in having  IMPORTANT SIDE EFFECTS

 

NIC

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you thank you,
Ive been dying since taking letrozole ,pain getting up ,walking, eyes getting difficult reading ,slow brain, have stopped, and many symptoms have gone .Now i know im not alone... chimo,masectomy and rediation were way easier. Hope to get through .no more depression,!! Thanks again
Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Ladies I was stage 3 BC and was given Letrozole for 5 years initially! During this time the brand has changed at least 5 times all coming with their own side effects!

Flu like pains, hair and lashes thinning and brittle nails! 

At my Onc appointment in February I grumbled about the side effects and he said I could take a break to see if it made any difference. I had been taking it for 3 and a half years.

I have been off it since and don’t intend going back on it unless it’s a matter of life or death! He said there wasn’t much medical evidence to prove that staying on it for over 5 years was beneficial.

After a month I realised the flu like symptoms had gone and my nails are now much stronger. I still seem to have thinning hair!😮

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I must say it makes scary reading.I had stage 3 grade 3 breast cancer.Had Fec-T and 5 weeks of radiotherapy and a mastectomy.Was on Tamoxifen for 2 years and went back to surgeon because of fatique and liver problems.
Was taken off Tamoxifen for 2 months while blood tests etc done.
As now in menopause have been put on Letrazole.
Must say after only 3 weeks I'm struggling with worse fatique and such awful.bone pain.
My brain feels like mash potatoe and My moods are very very low with thoughts of 'wishing I wasn't here".Most of the comments mentions side effects taking months but I feel so unwell already.Im hoping the headaches, mood and pain will ease??
Karen x
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Flora B. I had lumpectomy Fec/T, and 15 days if radiotherapy. Followed by 15 herceptin injections. 

I was to I I’ll have to be on hormone therapy for 10 years. I am afraid I can’t do lol that time on these pills. I am 65 years old, I think the bone pain I could handle nd the tiredness. But wanting to kill yourself was such a frightening experience for me. I am the 4 one in my family to get breast cancer. I am not carrying the gene. 

My mind is defo not the same I am so forgetful and that’s not me. Plus my eyes re bad now. Got cataracts in both eyes. 

Myminds in. Spin. 

 

Sue. 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Dear Scotsrambler

 

Sorry to read about your experiences with Letrozole.  They have much in common with my own, but are much more extreme.  Like you, I had a stage 1 cancer and had radiotherapy.  Both the surgery and the  radiotherapy were well explained, but the Letrozole was not.  I was quite surprised to learn I would have to take it for 5 years.  In fact I gave up after 3.  I see that you took it for much longer.  When I visited the cancer clinics at 6 month intervals I was routinely asked how I got on with the Letrozole and for most of the time I was able to say I thought I was getting on OK.  But there are two points here which were not made clear to either of us - firstly that the side effects are similar to menopause side effects which we could well be experiencing anyway, and secondly, that the effects take a LONG time to build up - years, rather than months.

 

It was only when I had evidence of damage to my eyes that I decided to question the value of Letrozole.  The oncologist told me that having taken it for 3 years it had probably built up sufficient protection for me.  So, this begs the question as the how long it should be prescribed.  I thought the standard period was 5 years.  You seemed to be taking it for much longer.  Now I have given up the hormone treatment I have been discharged by the Breast Clinic.  Apart from the annual mammograms, they are not monitoring me so are not in a position to assess the effects of stopping the treatment.  This is one reason why forums like this can be so useful.

 

The questions we now want answered are whether we have suffered any irreversible damage from using this hormone therapy.  I know that my eyes are permanently damaged, but cannot be completely sure that is because of the Letrozole.  I suspect that, in addition, my bones are worse, but the oncologists I have seen do not seem to be sure.  My GP suggests that the bones can be partly built up again by the continued use of Alendronic Acid.

 

Do you know whether you have suffered any permanent physical damage?  As for mental damage, I do not think terms like "Brain Fog" are much use. It is hardly scientific and is quite perjorative. I felt it was much easier to come to terms with having a small breast cancer than it was to cope with a wide range of possible side effects, some of which could be longer lasting and more damaging to my wellbeing and independence.

 

I wish you well, and hope you will continue to recover from the side effects.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi scotsramber.

i can totally agree with what you have wrote on here. I felt like that after only 5 months. Benn off the letrozole now for 4 weeks and I must say I feel a lot better. But I have got to go back and see my oncologist next month so I surpose he will want me to take something different. But looking at the side effects they all seem to cause the same symptoms. I am at a loss as to what to do. 

 

 

💗sue.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I  was diagnosed with stage 1 Breast Cancer   August 2009, had the op and readiotherapy, and was put on Letrozole   Noveber 2009. I was prescribed Legtrozole and  took it until March 2017. I was given no indication of the side efffects when put on the drug. Slowly the side effects started to build up and I went from an active woman  horse riding,canoeing, walking ,photography,yoga, driving long distances, gardening, and Fund raiser , until in March  2017 I ended up wreck.  Always been a competent driving I started to feel nerviouse with out any apparent reason. My eyes became very sensitive to light and, felt as if my eye bals were too big for the sockets. They became  extremely drey and I had to give up wearing my contact lenses, which I had worn for at least 25 year.  A vist to my GP was met with  the advice that they would improve when the weather changed???.  I was putting drops in about every hour and limited the amount of driving I could do. Then the panic attacks started and I found I was racing around a shop to get out and seek sanctuary in my car.  I give up horse riding, when the horse tried to throw me and roll on me. I belived because my anxiety was being transferred to the horse.  I loved walking in the hills until ond  day I set out and my limbs felt so rigid I feared I would not get back to my car.  When I  ceased  the drug on medical advice  I spent two weeks on a sofa hardly able to walk because of the acute pain all over my body.  I would burst in to tears  for no reason. After 8 years the  phrase Super Menopause and Brain Fog  appeared in the medical conversation. I had twice asked my GP if I was starting with dementia, his reply was "I have alwasy beeen able to undersatand you. A none answer.  I have been on a Mystery Tour, a Roller Coaster of Medical Knowledge that they didnt seem to want to share with me.  Well 10 months down the line  and having been sign posted to the Snowdrop Centre  for Talking Therapy and neck  and upper body massage, I am now feeling like a human being. I am nowhere  the same person I was 8 years ago. OK so some will say that the diagnosis of cancer does that to you, but  I believe that the drug has changed my personality it made me incapable of making rartional decisions  and took me into a  very dark place. But I am fighting back one day at a time, and making my life worth while, small steps. I had faced up to the diagnoseis of cancer and been positive because everything had been explaned very clearly to me , but regarding the drug Letrozole  it was as if no one wanted to  warn me of the side effects so I could be prepared and not suffer the frightening experence  that it turned out to be.. I take termeric golden milk  which has helped  in healing my broken spirit and body.  Wishing everone  the peace and love to over come  and complegte the jouney on Letrozole.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello Pili Pala

 

I believe that Letrozole has seriously affected my vision and caused glaucoma in both eyes.  I had an eye test 6 months before diagnosis with a small stage 1 tumour.  The eye test was normal for me.  I had the tumour and some lymph nodes removed and a 15 day course of radiotherapy.  I was put on Letrozole immediately after the operation, and told I would take it for 5 years.  It is difficult to sort out the side effects of a drug which has similar (but worse) effects to what we experience at this stage of life.  I didn't feel exactly well but was glad the cancer had gone.

After 2 years I thought I needed another eye test.  There is very little literature about Letrozole and eyes.  The patient leaflet only briefly mentions it. I was eventually diagnosed with glaucoma in both eyes, and loss of field of vision - this means I have to take additional vision tests in order to keep my driving licence.  Neither the oncologist nor the opthalmologist thought there was any connection between this vision loss and the Letrozole.  But I was upset enough about my eyes and I stopped the Letrozole. 

The opthalmologist tells me that glaucoma is very slow degenerative disease.  Yet in my case significant damage happened relatively quickly.  It is a year since I stopped the Letrozole, and as far as I can tell, the glaucoma is stabilised.  The period of damage coincides with the period I was taking Letrozole.

I suggest you get your vision tested as soon a possible, in particular your field of vision.  My glaucoma didn't show up on the other tests.  If there is damage, it is best to catch it soon.

All the best.

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi all, I started on Letrozole last September and almost immediately it started affecting my eyes.  I went to my GP and optician and was diagnosed with dry eyes.  They became very painful despite applying drops throughout the day.  When I saw my oncologist she confirmed that it was due to the Letrozole.  During my radiotherapy in November I was told to stop taking Letrozole for a while and surprise surprise my eyes improved!  Since going back on them in December however they are worst than ever.  I have now reached a point where I struggle to open them at all, they just burn so much.  Has anyone else experienced this?  If so can you please tell me for how long I can expect it to last?  Seriously thinking of stopping these meds altogether as I can't continue lioke this.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

when I was on Lerazole I couldnt remember things had a lot of confusion and fatigue .couldnt function at work .and felt very low
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Brendie I just read your post this is the same things I am suffering from. I have stopped taking mine I had only been on them for 6 months. At one point I felt like killing myself. I have been wondering if anyone else had had these feelings. Let me know how you get on. 

 

Thank you 

sue 💗💗

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi all,

I wonder if anyone can help me. I've been on Letrozole for almost a year now. I was diagnosed with Stage 3 Breast Cancer in 2015. Having had Chemotherapy, Radiotherapy and a partial mastectomy, I then have been taking these tablets. 

I enjoyed a holiday abroad for two weeks, before commencing on these meds, and flying has never been a problem. But, since commencing these meds, I have had anxiety issues. I have suddenly had a fear of open spaces, heights and this scarily appeared when I was flying on our last holiday!! Is it these tablets, or something else that's suddenly made me have this problem? I can't believe it, I'm usually such an outgoing person, and out of nowhere this happened. 

I'd truly appreciate anyone's opinion on this x lol x I'm sorry if I sound like I've lost it, but this anxiety problems has only appeared since I've started these meds, so this is what I'm blaming x lol x Anyone else had similar symptoms? 

Thanks everyone xxx