Member
Posts: 3
Registered: ‎14-08-2018

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
Posts: 3
Registered: ‎14-08-2018

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
Posts: 3
Registered: ‎14-08-2018

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
Posts: 4,369
Registered: ‎02-02-2014

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
Posts: 4
Registered: ‎07-09-2015

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
Posts: 256
Registered: ‎11-02-2016

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
Posts: 9
Registered: ‎15-11-2016

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
Posts: 256
Registered: ‎11-02-2016

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
Posts: 2
Registered: ‎04-02-2018

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
Posts: 9
Registered: ‎15-11-2016

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
Posts: 44
Registered: ‎28-07-2017

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
Posts: 208
Registered: ‎23-01-2017

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
Posts: 256
Registered: ‎11-02-2016

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
Posts: 9
Registered: ‎30-12-2015

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 

Community Champion
Posts: 1,046
Registered: ‎21-01-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you, Mrs Merton , hugs received and very much appreciated . X

Member
Posts: 145
Registered: ‎17-11-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Annie, just wanted to say sorry to hear your news and send you a hug through the ether. It's all very unfair.  Hope you get access to the best advice and treatments and have many more years to enjoy. Xxx

Community Champion
Posts: 1,046
Registered: ‎21-01-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Sgagliardi, I'm not on your regime but sending you a big hug and acknowledging your post. I know where you're coming from as I was told on Thursday I have lung mets, and I'm just coming to the end of my radiotherapy. Absolute bummer, isn't it? My Onco was very upbeat about it all, easy to treat and lots of options.  I'm on Letrozole at the moment,  and it looks like I'm going onto a new drug that's only been out for four months. Two Oncos can't be wrong, can they? Onward and upward, then. Well just learn to live with the cancer, but we'll be damned if we're going to die from it! X

Member
Posts: 15
Registered: ‎22-08-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi I have just been diagnosed with stage IV breast cancer w bone mets right off the bat. I am 49 yo and these last 4-5 weeks have been such a whirlwind! The plan is for me to take letrozole and ibrance while receiving monthly injections of xgeva to keep my bones strong. I am to start this on 9/13. My dr says there have been great success with this treatment and with all of the available options out there for my type of cancer that I can see a lot o years with good quality of life. I am so hoping this is the case. I remain very positive. Looking for any feedback from anyone who has been on this treatment.
Member
Posts: 1
Registered: ‎28-08-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Pammie - how are you getting on now? I have been on letrozole for about 3 months and I am still getting daily headaches (as well as hot flushes) - I have been told that I will be on Letrozole for 10 years - so I am desperately hoping the headaches will go away soon!

Community Champion
Posts: 1,752
Registered: ‎19-08-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Pammie

I had that for a while, but after a few months it wore off. Make sure you drink plenty of water xx