cancel
Showing results for 
Search instead for 
Did you mean: 

LETROZOLE SIDE EFFECTS; PLEASE HELP

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.

Highlighted
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