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LETROZOLE SIDE EFFECTS; PLEASE HELP

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello flora
I find that if I have the " Cipra " brand of leyrozole ..an hour after taking it ..I get blurry and itchy eyes and seem to blink a lot.
I am now back on " accord" brand and much better with less side effects. I think I ache a bit more on this brand but don't get the itchy scalp/ hair loss and cystitis like I did with Cipra.
Try switching brands ...ask at chemist. A lot of ladies prefer sandoz brand as its nearest to the original brand of femera .
Carolyn xxxx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello.

 

Has anyone else experienced effects on their vision which could be a side effect of Letrozole?

 

I had a lumpectomy and adjuvant radiography in early 2015.  I have been taking Letrozole for 18 months to prevent recurrence.  I also take Alendronic acid and a calcium tablet because I am borderline osteoporotic. I have experienced some (if not many) of the side effects that other users mention - joint pains, cramps, hair loss, loss of libido - but not particularly severely (!).

 

I am also short sighted and have NHS eye tests every 2 years.  At my last eye test in September 2016 there seemed to be a problem and I was referred by the optician to my GP and then on to an Opthalmology Clinic.  Following tests in each eye I was asked to take the driving test - both eyes tested together while wearing my glasses.  To my astonishment, I failed and was told I can no longer drive.  It appears I have lost some of my field of vision.  I am still waiting follow ups so I am not sure of the exact problem, it all happened too quickly to take in - glaucome and ocular hypertension were both mentioned to me.  The eye test previous to this happened before I was diagnosed and treated, and nothing showed up.

 

I had been aware that the vision in one eye was not as good as it had been, but certainly not that it was illegal.  Indeed the eye specialist confirmed that I would not necessarily have noticed the change.  

 

"Fuzzy vision" is occasionally listed as a side effect of Letrozole.    My questions are:

  • Could this loss in my field of vision/possible glaucoma be attributable to Letrozole?  It seems to have happened too quickly to be simply ageing
  • If it can be attributable to Letrozole, is it possible to recover the damage?
  • Is the Alendronic acid also likely to affect the vision?

Waiting to see an eye specialist and the cancer team.  Would be very interested to know if others have had a similar problem.

 

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you carolyn x

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello sue
I think it takes a while for the body to settle in with these pills. I was told they take six weeks to work so it does seem quick to get se so maybe it's a coincidence.
There are different brands so if these se do continue ..you might need to change over to another.
I have been on them a year now and have had a few things but it does settle down.
Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

Only been on letrozole for a week and feel really rotten ..... headache,lethargic, muscle aches etc. Are these side effects, or have I just got a cold and its a coincidence? I suppose only time will tell. 

I was wondering if it's a drug that your body needs to get used to? I think if it were short term I could cope, but a year (or maybe more) is going to be challenging that's for sure.

Any advice from ladies on letrozole would be much appreciated.

Thanks. Sue x

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I think they are normal side effects ..the metallic taste especially ...I often think its a rotten tooth !! Main thing is to take the tablets with food if you can ..it helps. I find a cod liver oil tablet daily helps with joint pain.
But ..it's an important part of the treatment if you can put up with it.
Carolyn xxx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have been taking Letrozole for 9 months and, apart from the usual pains, have terrible nausea and a constant metallic taste.  Has anyone the same problems and do they go away with time?

Thanks.

Elke

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have been on letrozole a year now and find that I need to use the loo more too. It's an urgent feeling.
I have had several different brands and the side effects vary a lot. Some more hair loss and itchy scalp, some a itchy burning feeling too.
Once you find the best brand ask the doc to mark the prescription to keep it.
Carolyn xxx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have been taking Letrozole for 3 months now. I have developed the most horrible burning sensation all over my body - but especially badly in my hands and feet. I am exhausted and very low mentally. I also seem to need the loo more frequently.

 I'm going to have to see my doctor because I can't tolerate this much more. Anyone else had similar symptoms?

CTL

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I was on letrozole for eight weeks and then I gave them back. I was severely effected by sweating, and weeping , violent tempers, and leg pains. I told the oncologist she could shove em up her bum. I simply wasn't taking any more. After 4 days off them I was back to normal. 

Now I am on exemestane . And I feel ok. After the lumpectomy and radiation I thaught my life could never be right again but now I am feeling much better.

life isn't over just different .

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Diane84 sorry its a bit late in reply but have only just joined up.I have been on letrozole for four years now and my weight had piled on.in January I joined slimming world and have managed to lose two stone. It has taken me longer than other people but its coming off slowly. Go online and look at their sample menus it is a good healthy eating plan rather than a "diet".
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Diane84 sorry its a bit late in reply but have only just joined up.I have been on letrozole for four years now and my weight had piled on.in January I joined slimming world and have managed to lose two stone. It has taken me longer than other people but its coming off slowly. Go online and look at their sample menus it is a good healthy eating plan rather than a "diet".
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have put on weight. Does anyone know how to counteract this? 


@Lexxie303 wrote:

Hello everyone can anyone help me with side effects from a change from Arimidex which was causing me really bad joint pain (particually in Ankles) My Oncologist changed the tablets about a month ago and since then I have been suffering from profound loss of appetite, over a stone in a month, which is making me very weak. Constant retching and nausea and headaches............as well as the usual hot flushes and aches and pains. I was admited to hospitial through a&e for a couple of days and they checked all bloods etc ans gave me anti-sickness pills which don't help much. Ended up discharging myself as it was hell and no-one knew what the problem was.
I had masectomy just over a year ago, chem, rads, herceptin since then. Had to stop Herceptin due to it causing heart damage but was due to re-start, now this! I feel more sick now than when on chemo! Has anyone else had problems like this or any idea what I should do? I'm really scared that it's come back already..........My Ankles are better though!


 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Just look at the packet or box they are in and they will give the manufacturer's name.
I would think that your brand might b a lot different than the UK ones though.
We have Cipra, accord, and Santoz brands. Maybe yours are femera which is the original one.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

How do I find out which brand of Letrozole I am getting?

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Be sure to drink lots and lots of water with the magnesium. I found great relief in it, but didn't realize the effects it has on the kidneys. Kidney stones are excruciating! When my dr tested the stones, he linked them directly to the magnesium and calcium supplements - primarily the magnesium though.
Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Carolyn I take vit d/ calcium tablets in addition to Letrozole!
Tell your son it has been very hot here with temps going to 44 in the day although they have said it will cool by Monday!
I am just off to cool down in the pool!
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hiya Rosie
It's a great site for support and info isn't it? Yr so lucky living in Cyprus ..I've been there on hol and my son is going on Sunday for eight days.
I think I don't suffer the constipation thing or brittle nails as I have Adcal calcium tablets daily and bone strengthens so my nails are really strong and I have to keep filing them!
Not sure which vitamin pill you could take to help with nails ..get a bit muddled with vits.
Its a struggle with these things but needs must.
Xxx
Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Good afternoon Carolyn and Judi thanks for your responses! It is comforting to know that we are not alone! I forgot to mention the fatigue, weak nails , constipation from time to time and memory loss!🙀
I was given Femera to start with then accord then clipa and now Manx!!!! I live in Cyprus and once you have been treated they aren't very bothered about your ongoing emotional or physical journey! The first time I noticed that the presciption had been changed I told the pharmacist I had Femera to which he replied, "is Femera " that's when I first had Accord!!
I agree Judi the forum is great 5 ladies from the April 14 chemo thread are having our send meet up next month!!' It has been my Bible living overseas! 😏

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi rosie14 I'm about the same amount of time as you with the letrozole after chemo radiotherapy and herceptin even after all that treatment this medication is what I am struggling with many a time I have wanted to throw in the towel but I know I'm scared too because I know what this tablet is preventing I am on my second brand the first was cipla that really didn't work for me currently I'm on accord my side effect is a really stiff arm opposite to surgery side in a morning I feel about 80 it's so painful I find doing certain chores painful and  my legs ache as well the pharmacist said to me there was no difference between one brand and another but I'm afraid I beg to differ femera is supposed to be the best which is the pure brand but my gp and pharmacist are reluctant because it is so expensive and it would be the very last resort some GPS will prescribe I know some ladies on here take it I went to to see my Dr the other day and asked her if I could chop the tablet in half I'm still getting the amount but not all at once I really do think it is helping I take half in a morning and half at night hope this helps Rosie love judi xxx ps what would we do without this forum so much info from other ladies it's been such a comfort to me since I started in 2014 plus I've found some great friends through it xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Unfortunately all the hormone therapies have side effects and sods law ..guarantee I get them all at some time !!
It's a very strong little pill though and I had trouble with the hair thinning but its under control a bit by not washing or colouring it etc.
Sometimes I feel.like I have an army of ants wAlking around inside my skin too.
As for brands .. I'm getting fed up with different ones and am asking doctor to mark my prescription for "accord" so at least I get the same side effects!!
Carolyn xx
Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I am 18 months down the line with Letrozole and have been prescribed with 4 different brands each one having some similar side effects and some new ones! Or is it just a build up of 2 years of chemo, surgery, radiotherapy and heceptin and 18 months of Letrozole?

some days I get very bad achy pains in my legs, some days intermittent headaches, some times a heart race for a few seconds, a skin rash that stated on my foot and has now spread round the ankle and now I have noticed it on my fingers! Itnbegins as white pimples and then start to burn become red and then then skin peels! My oncologist did give me some cream for it which initially it seemed to work but it has come back with vengeance! My memory is getting worse too!!!!

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I am 6 years down the line from diagnosis, chemo and radiotherapy. I have been on various brands of Letrozole; some with awful side effects; some less so. I put up with them as I expected to be discharged after 5 years, only to be told current research and statistics indicate 10 years to be better than 5. 😢 These last few months have been painful - the usual side-effects list - despite lots of exercise - aching everything. HOWEVER! I read on another blog, a recommendation to take two Adcal (calcium/Vit D supplement) twice a day (prescribed already)  and MAGNESIUM twice a day - but not at the same time. The second magnesium an hour before bedtime. I am only a week in and already feel better. I slept right through the night last night for the first time in months. My feet don't hurt when I walk and my joints are much less painful. Reading up what the function of magnesium is in the body, it does make sense. Try it!

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Girls - don't panic - it does ease up.  I have been on Letrozole (Femara) for over 3 years and look back to the first 12 months as a very bad dream.   Some of the symptoms will stay with you like aching joints; sore feet; tiredness - but exercise really helps.   If you are not up to walking - I can highly recommend warm water at your local hydrotherapy pool - gentle exercise really helps with pain.  Fuzzy brain also eases up and your mind does come back to some semblance of normality.

Stick to your therapy - Hormon Medication is better than cancer.   All the very best.

Aussie Girl.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

same here but I know now as well I am not getting mad ....
Member

Re: LETROZOLE - I want my wife/life back.

Hi

I am on Letrozole and cannot believe how same the efects of this drug are to me. Just to let you know its not easy, got all the effects that you just explained! mental health is the worse, so horrible to change so much. I used to be so sharp and now so disfunctional and the nightmares I got ! and no sleep...all same as you written about your wife. its just horrible 

Member

Re: LETROZOLE - I want my wife/life back.

Thanks ollisj6

i think my mine is just over reacting , I will try and see my oncologist after Christmas to have a chat with him xxx

Member

Re: LETROZOLE - I want my wife/life back.

Hi susiex just to say I am currently taking letrozole I have been on it since march and I have had really ad joint pain especially upper arm and shoulders I have difficulty fastening my bra now I was so worried at one point I the oncologist requested a bone scan which thankfully came back clear I am on herceptin which finishes shortly and that gives me joint pain but I honestly think it is the letrozole I am going to stick it out until march which is a year on it  but then if it continues I will have to probably change to a different inhibitor love judi

Member

Re: LETROZOLE - I want my wife/life back.

I am really struggling with pain in my lowers arms they just seem to be aching all the time . I was diagnosed with DCIS 5 years and have been great until I was changed to letrozole. I am really worried that it might be more than the letrozole should I ask for a bone scan? 

Member

Re: LETROZOLE - I want my wife/life back.

Hi (I can't call you Pecky!)

 

I am so sorry you both are going through such a long and difficult period. It can take a long time to recover from treatment and in many ways things never get back to 'normal'.

 

My experience was lumpectomy, snb, radiotherapy and Tamoxifen, starting just over two years ago. I too experience the tiredness, hot flushes, cold sweats and mental fuzziness. I do not know what to put it down to, the whole experience, the surgery, the trauma or the medication or the cullmination of it all. I guess some of it is just getting a little older too!

 

I try to excercise as much as I can, I take lots of vitamins and omega pills. The tiredness comes and goes, some days I am yawning my head off mid-morning, other days I am out for the count by 8pm. 

 

I too find the mental changes the most disturbing and when I have bad days I really wonder if I am suffering from early-onset dementia. My stategies are to ensure everything gets written down, to-do lists, passwords etc. I have found cognitive training to be helpful and the more I do and get organised the better it is.

 

Have either of you considered some counselling? Free counselling is available and I really found it helpful.

 

Take care.

 

Mary 

Member

Re: LETROZOLE - I want my wife/life back.

Hello everyone. I'm not sure how many men you have contributing, but I'm sure I'm not the only one.

 

My lovely wife was diagnosed with Breast Cancer just before her 40th birthday in December 2010. She had 9 months of Chemo which included Herceptin and Docetaxel, Radiotherapy, and  a mastectomy with lymph node removal. This was followed by a couple of years of Tamoxifen.

After suffering abdominal cramps, she had both Ovaries removed due to cysts, (I'm convinved this was the start of Ovarian Cancer caused by Tamoxifen.), but no one ever biopsied them. I still wonder why.

 

At 42 she was then post-menopausal, (she was happy never to buy sanitary towels ever again),and the meds changed to Anastrazole. Unfortunately, the side effects meant a change to Exemestane. These were no better. The only other option was Letrazole. She is now 5 years down the road from diagnosis.

 

We expected the side effects during all the hospital treatment, not 5 yrs down the road.

She is tired all the time. Her libido (and mine) has gone. Which is bloody annoying since we have been together for 26 years and always had a great sex life. (well I enjoyed it !)

 

She is in constant pain from her finger, elbow and knee joints. Walking, flipping the bird and elbowing her way to the bar all cause her pain. Her sight had deteriorated rapidly, so much so that she has gone from single lenses to variofocals in a year. She gets blinding headaches at random times. She gets dizzy spells and heart palpitations at really odd times when there has been no physical or sporting activity . Then there are night sweats - but she complaints of being cold most of the time. She has nightmares and mumbles and shouts incoherently. She jerks around quite alot too. Sometimes for hours. Its like trying to sleep whilst Usain Bolt does laps round the bed. She / We havent slept properly for five years and for the past year, I've slept mainly in the spare room to increase the chance of at least one of us getting some sleep.

 

These symptoms are miserable but my greatest fear is for her mental health. This is a woman, who was good with numbers, who could make quick fire, informed decisions in high pressure situations. She was confident, outgoing and well respected in the organisation that we work for. She could juggle numerous work and home tasks, whilst enjoying a glorious social life.

 

Now she struggles to remember the dog's name. She will start a sentence and forget what she was going to say by the end of it. She cant remember words for things, and generally we just point at things now, or go through a game of Charades with me shouting out words like, "tea pot", "skirting board" and "butt plug" just for a laugh. She is definately going to win at Christmas - unless she forgets the name of the film / book/ TV programme. Our friends are all called "Thingy" or, "You know...your mate..." Her short term memory is worse than mine. I normally get asked three times if I want a cup of tea. Sometimes it never arrives. When it does arrive, sometimes its coffee.

OK, some of this is an exaggeration, but its gone on for so long now....

 

And she's got so aggressive and argumentative. (she'll deny it). Most husbands are wrong at some point. I'm wrong most of the time, and probably wrong for the rest of it too. I can never win an argument and minor discussions normally turn south.

 

I am absolutely convinced that many of these symptoms are side effects of these drugs. (Most are listed on the paper info sheet in the box). I want her to stop taking them, but shes convinced the Cancer will come back. The yearly Oncology check up was **bleep**e. It wasnt even her Consultant, just some Egyptian dude on a work visa. He was more interested in looking at the new breast than talking about her meds. He didnt even do a blood test. It would appear that after the third year of survival, you become a bit of an inconvenience to the Oncology Dept. We have become very reliant on the MacMillan nurse and regularly call in with tea and cakes for a chat.

 

After keeping it all together for five years, running around all the hospitals, bringing up our child, keeping house, running a Sea Cadet Unit and holding down a full time job as a Police Officer on shifts, around about Christmas last year, I had my own quiet mental breakdown.

I turned the light off, and for a while and my mind went for a little walk.

I never saw it coming. I was diagnosed with stress, extreme anxiety, depression and PTSD. I went back to work after five months and now train others to do the job I can no longer face.

Was Cancer a contributing factor? Probably. Were the side effects a contributing factor - Hell yes!, just see above.

 

I'm not sure I can stand to watch another five years of these side effects or the continual detriment to her health. Is Osteoporosis, Dizziness, Joint pain, and deteriorating mental health worse than secondary breast cancer?

Which is going to extend her life expectancy or degrade our quality of life.?

 

Is there any alternative or are we stuck in a Catch 22?

 

This all sounds like a moan and whinge, but its not. Its become normality for us. We have laughed a lot in the past five years, mainly at ourselves. We have become emotionally closer and sometimes she remembers my real name (Which I think is **bleep**head by the way). I am just grateful that I have my wife and she has her life.

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Grumpy,

 

I am on Adcal also but, thankfully, I don't seem to get any side effects' from taking them. Glad you managed to find an alternative that provides the same dosage hope they continue to work well for you.

 

Deffo worth a try though for those of us that experience problems from the tablet.

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Bone thinning when taking AIs...... I was prescribed Adcal, only took them for 4 weeks, couldn't cope with gut problems at all. My GP worked out how many of the over the counter calcium and vitamin d tablets to take to get the same dose (4 each day) so that's what I do now. Clinic happy with this strategy. Might be worth a try.

Grumpy

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi everyone,

 

What interesting reading this thread makes!    I have been on Letrozole for nearly 2 years and these past few months have been horrendous, I seriously feel like a 90 year old!   My oncologist had always told me it was because I was taking Letrozole and Zoladex but I finished my Zoladex in Feb 2014 and since then I've got worse, not better as I had hoped!   I saw my oncologist again last Wednesday and he has told me to ask my GP for Femara brand so I'm seeing my GP tomorrow.    Hopefully I will start to feel a bit better!    I also had an xray on my knees last weds whilst at the hospital as I have been complaining of them being really painful, the oncologist says my bones do look like they are closer together than they should be but got to wait for the report to be done - now my ankle has started and I'm struggling! I'm hoping (and silently praying) Femara will help!    

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi everybody,

 

I previously posted about the awful side effects I was experiencing from Letrozole.  I made an appointment to see my GP and he agreed to prescribe me with Femara again instead of all the other brands I was getting. Since that time I am pleased to say that the side effects have much improved.  Although they have obviously not gone completely and probably never will,  I am grateful for the improvement.

 

Love and hope to everybody

 

Patsy

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you so much for that information June.  I will most definitely call the number you provided and keep my fingers firmly crossed whilst I do so.

 

Many thanks

Patsy.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello PatsyT

 

Welcome to the forums.

Whilst waiting for replies to your post maybe you would like to give our free helpline a call where the staff can offer practical information as well as emotional support. 

The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Everybody

 

I have just found this forum and I am so pleased that I did.  I have been taking Letrozole for 4 years and at first the brand name was Femara and I had no problems.  I went to collect my prescription one day about a year ago and noticed that the box containing my Letrozole was not labelled Femara.  I queried this with the pharmacist and he stated that the strength was the same and the brand doesn't matter.  After reading some of the comments on here I am beginning to wonder. For the past ear I have been in pain with aching joints and hips.  I have always been active but I feel this is really affecting my quality of life, no matter how I sit or stand I have a pain somewhere.  

 

Although  I would never wish this on anybody I am really relieved to find that there are others experiencing the same problems.  I have read some interesting suggestions on here and I will defintely try some of them especially the supplements.  I am going back to my GP to ask about being put back on Femara just to see if there is any difference,although as somebody said due to the cost I don't suppose I will have much luck.

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

I just wanted to offer another view.

 

I've just passed my 5 years on femara and am on them for another 5 years. At first  I thought 'I can't do this for 5 years.....it's as bad as chemo'.............but after a few months the side effects gradually eased. Ok, I've put on weight, my libido is zero, my bone density has decreased......but I'm still here & I'll gladly put up with the side effects that I have as an alternative to stage iv.

 

I do feel for those who have horrendous side effects, but there are some who don't persevere and give up at the first hurdle.

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

I just wanted to offer another view.

 

I've just passed my 5 years on femara and am on them for another 5 years. At first  I thought 'I can't do this for 5 years.....it's as bad as chemo'.............but after a few months the side effects gradually eased. Ok, I've put on weight, my libido is zero, my bone density has decreased......but I'm still here & I'll gladly put up with the side effects that I have as an alternative to stage iv.

 

I do feel for those who have horrendous side effects, but there are some who don't persevere and give up at the first hurdle.

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I didn't see the original post but I reduced 10% or more of bone density in my first 2.5 years on letrazole then my naturopath and I talked about other symptoms like cramping and jaw tension and I stopped taking calcium tablets (only once in a while) and went on magnesium and Vit D ... have regained 7.6% bone density. Just finished tablets yesterday.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Try phoning the Osteoporosis society , there are lots of different drugs, even 6 monthly injections you can have , sadly you have to be fairly assertive . I was very happy on Strontium Ranelate till the latest research findings on it. Nothings easy is it.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Sandra ! Long time - hope i've got the right Sandra and you are well. Still on Femara? i get given all sorts of brands, and suffering depression, dizzy head, nausea, never had any of that before, it all came on gradually - heard of that before on Letrozole please ? Blood tests all neg.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,  I'm so glad I read your letter. The hospital keep denying that all of the terrible side effects I have are anything to do with the Letrazole & the zoladex. So I've just had a full body scan, which scared the life out of me, as they are saying it's not normal to feel sick & weak all the time, with headaches & loss of apetite.

Not just that, it's now a huge effort just to go for a long walk, I feel 90 years old. walking up stairs, leaves me breathless, with my knees & lower calves throbbing.

I have to wear a vest & shorts all the time, otherwise I feel like I'm being strangled, with my chest & calves throbbing & pouring with sweat.  I wake up at night soaked with sweat.

It was only when I suddenly remembered the awful side effects of the tamoxifen, that I had to stop taking 14 years ago, where just getting on a bus made me want to vomit, that I decided to read other peoples stories.

I feel better now, after taking a Metoclopramide anti sickness tab.  But now I've decided to have the dangerous op to remove the cancer from my neck, as these Meds have practically robbed me of any quality life.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have been taking letrozole for 8 months and have suffered from personal dryness but seem to have tolerated the letrozole quite well. I had a bone density scan and have been advised to take medication but I have been unable to tolerate any of the three different medicines that have been prescribed they all gave me terrible tummy problems, but I keep being told by the doctors that I must take this medication as anyone else been through this and found a solution.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi everyone, thank's for all the info.....so good to know i'm not alone! I havn't taKen the letrozole for six days now and am feeling little better. Have to have anti-nausea from rhe nurse everyday and top up with pillls inbetween. I can hardly eat a thing and have no appitite at all still. Can anyone tell me how long it it them to get better after they stopped the drug? Am waithing for the results of loads of scans to see if it is anything more sinister and have to see the oncologist of Friday. Love and hope to everyone. Thanks all xxxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Ladies,
Can i join in,iam 49,Have had chemo,Rads and started on Letrozole on 7th January.I was ok for the first few weeks,but 0MG now i feel like an old woman,most of the time i walk with a permanent limp.My knees are awful.Iam taking Glucostamine and fish oils,but dont seem to be doing anything.Hoping the SEs get better.
I find the limping more embarassing than i ever did with having a bald head.Sorry you other ladies are suffering,but glad iam not alone.

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Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,

reading this had made me feel i'm not going mad !!! i've been on letrozole along with zoladex monthly injections since November 2011 and have been having terrible pains in my legs, knees, back, feet , hands somedays i find it hard work just to walk, have been going back and forth to my onc who even suggested at one point that these pains were all in my mind but i made it quiet clear that they wasn't in my mind so they run some blood tests which showed i was very low in Vitamin D and Folic Acid which i now take supplements for everyday but the pains are getting worse all this week ive been getting cramps in my fingers. Im also on a tablet which treats people for epilepsy. I'm 39 years old and my body just feels so old.

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Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Yep - it's good stuff. My friend's elderly mother refused chemo and radiotherapy for breast cancer but is taking letrozole and her latest PET scan has been very encouraging.

Good to hear it appears to be working for you Lucinda and that surgery is now possible, especially after such a wait. I wish you good luck with that.

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Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

hi puffy white clouds
As you say no matter what brand it is a very effective drug.I have secondaries in my bones and letrozole has kept them stable.It has also caused my tumour to shrink to such an extent I can now have the surgery I have been waiting for for 2 years.
I am quite happy to put up with the few se's I get considering the results of taking it.

L XX