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LETROZOLE SIDE EFFECTS; PLEASE HELP

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.

Member

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.

Member

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.

Member

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

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,
Have no idea if this is helpful or not, I am taking tamoxifen and for approx 3 months suffered from nausea, it was there when I woke up and stayed with me till I went to sleep. Cutting a long story short, phoned BCN and she said take the tamoxifen after tea/dinner on a full tummy.
Started doing that and within 3 days nausea had subsided, after 1 week none at all. Simple as that! The joint pain, well not so good.
Hope this works for you, I was taking anti sickness tabs too, don't need them anymore and only wish I'd known about the full tummy earlier, best of luck to you xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Cheers Lucinda, no worries. Just sticking up for a friend who is suffering and is very embarrased.

Yep, active ingredients in all the brands of letrozole are all the same - otherwise it couldn't legally be marketed as letrozole in the UK. I think people get s bit hung up about the fact that Femara/letrozole came off patent in UK in the past few months and is now available from other manufacturers. It's a very effective drug whatever colour the packet and constitution of the coating. Well, anyway, I like to think that it's very effective because I don't want to ever go back to the dark days of surgery, chemo and radiotherapy.

Good luck to everyone. Hope you manage to conquer the nausea. As Lucinda says, trying a different time of day might be helpful.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

The difference in the brands is not actually in the active ingredients it is the coating on thew pills.I was actually told this by my pharmacist who was happy for me to try as many brands as necessary until I could find what that was suitable.

Re the gentleman with the hot flushes.Sorry if it caused any offence.He was actually not expecting any sympathy and was quite amused to be suffering.It was a light hearted conversation between fellow sufferers.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

A change of brand may help but don't forget that the active ingredients are the same so if it's one of those causing side effects, a change of brand will make no difference. Personally I have been on several different brands (I think it just depends what the pharmacy has in stock at the time) and have noticed no difference in side effects. I've been taking Letrozole for 2 years and the joint pain has gradually subsided so I hope it's the same for those of you who are also suffering.

BTW, I know a man who is on endocrine treatment for prostate cancer and suffers with hot flushes and I do not find it amusing and consider that he is as worthy of my sympathy as any woman who suffers with the same side effect.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

hi georgi
have you tried taking at a different time of day or after a meal.
I find I cannot take letrozole by Teva as it gives me really bad nausea but am ok on Zentiva, so have you tried taking a different brand.
hope you can find a solution.

L xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you everyone, it is so nice to know I am not alone in struggling with side effects. I have been on Letrozole for a year and have had constant NAUSEA and migraines. The joint pain is not great but bearable compared to the nausea. I too take glucosamine and fish oil and agree it does help a lot with the joints. But what to do about sickness - today, a year in, I just feel like giving up. First on Femara and now on Zentiva.
Is there anyone who has conquered the nausea? And how? Any advice really welcome. Thanks.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Try the glucosamine. I Take it too and I has def helped with letrozole ses as did changing the brand. Good luck!

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hit Kit20,
It takes about 6 weeks for Glucosamine to take effect. Don't give up, I started it when I was on Tamoxifen 4 years ago. I could not move in the morning. Glucosamine has really changed my life. I am now on Letrozole and keep taking Glucosamine with no pain whatsoever.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, been on femara for two weeks. I am post menopause, as began at 36 so the hot flushes are something I am used to. I hate the joint pain though and atm am getting it it my finger joints, so I can't type very well or do housework - ha good excuse! Seriously though I am popping glucosamine, chondroitin and fish oils and still in pain. I don't know how bad it would be if I stopped.

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Lexxie,
I understood that it would not be a worry if I forgot a tablet so missing a short spell doesn't seem much different. I have not experienced the side effects you have and I think it is a very different decision if it has that big an effect on your life. The different brands are worth trying, maybe you need to find a helpful pharmacist to look through the differences in ingredients. I have found some very knowledgable in these sorts of things
Good luck
Lily

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I was at a Mamillan meeting today and one of the men there was having hormone injections for the prostrate cancer.
He was complaining about the side effects and the "hot flushes".
Needless to say he did not get any sympathy and we were all quite amused.

Lxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank-you all so much for your advice and coments. What a nightmare!! I didn't think that the hormone therapy part was going to be so hard............Fool, that I am! Like everyone, reoccurance is the fear that keeps me taking them, but I really can't deal with this contant sickness/nausea. The aches and pains are bad enough, but bearable compaired to this. I am a gibbering wreck thank's to this, and I know I should be thankful for a positive prog, but some days are so hard. My poor husband is exhausted, by everything. I will talk to B.C. nurse about changing back or trying a diffrent pill. I had to have an anti-nausea injection at GP's this moring which has helped a bit. I didn't take my Letrozole yesterday and am un sure if I should take them anymore to see if the sickness stops? Then I will be left without any cover for a few days untill I can speak to my Oncologist. Don't know which way to turn. My BC nurse is away today so I can't get her advice. Will a few days without any tablets at all be ok, do you think?
Thank-you again evryone, hugs and blessings to all xxxxxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Lexxie,

Just a quick comment on the sickness - it may be worth trying a different generic letrozole. I was on Teva for 3 months when my supply ran out and I started on another generic from Ranbaxy. Cue bloating, nausea and throwing up. I stopped it after a few days of this while waiting for the chemist to reorder Teva and the problem went away right away, and I returned to the old brand. So worth talking to your chemist or doctor to see if that might make a difference.

best

C2010

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,
the more I read about people's experiences with all the hormone tablets, the more I am convinced that you can't really go by other people's experiences. I think you just have to see how it is for you as the side effects vary so much with people.
My experience was tamoxifen was worse. I described myself as wearing concrete boots when i woke up. In fact I could not bend my feet/ankles enough to walk downstairs on waking. Once I had walked around a little upstairs it was better and then I could walk down. I could not bend to tie shoes up and had to have slip ons, even pull on ankle boots were very difficult. If I sat my hips would seem to stiffen up and I felt really arthritic and old, no chance of any exercise and weight ballooning and continuing to increase. The day after I stopped my last tamoxifen the stiffness vanished immediately. So those of you who need this drug perhaps thisl help you to keep going if you know it is not permanent. I switched to letrozole (femara) and was warned it tended to be worse than tamoxifen and attacked fingers and hand joints most often. It didn't and I don't have stiffness anywhere. I take it at night and don't really have any side effects that I can pin down to it. When femara disappeared my chemist ordered me the generic tablets with the same coding so they were identical. I have been able to lose weight since stopping tam but still not where I want to be weightwise but it is a lot easier to lose on this regime. I have not had hot flushes on either but that is prob because i was close to menopause so not such a shock to the system. I get prickly heat with them both, like needles all up my back and have to cool down quickly to make it go. Strangely I was the bets ever when i went to Turkey in August and it was baking?
Good luck and take them if you can as they are helping to keep most people safe and the treatment if you had a reccurrence would not even compare.
Lily x

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

MG,

thanks for your thoughts...I wonder too if maybe Tamoxifen might be better. Think I will explore this soon if things don't improve, but thanks for the idea.

Wandyx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

It's hard to believe one little pill can cause so much pain! Every joint in my body ached...the thought of five years of hormone treatment and the side effects leaves me feeling even more sorry for myself...as if Breast Cancerisn't bad enough the treatments worse! At least I'm still here I suppose even if I'm a shadow of my former self... X

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

hi
I have been on letrozole now for 18 months.The only really bad side effect I had were the hot flushes, and they are nowhwere near as bad as at the beginning.I did find I had nausea but I now always take it after my evening meal and I found the nausea improved.
I did have problems with the generic letrozole ( I had always had femera)but I have now found a brand that has mimimum se's.
Personally I find it difficult to work out what causes my joint pain.My latest bone scans show degenarative wear and tear in my hip,knees and ankles.
I do take Glucoscamine,omega 3 and vitamin D to help with the pain and swellings ( recommended by onc).
My latest scans show everything to be stable so this at least makes the se's bearable.
Hopefully you all find a solution soon,maybe a different hormone?
Good luck
L xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi both,

That sounds horrible. Hormone therapy is really useful but its SEs can be nasty.

Just to say, I am only on tamoxifen which may be different in its SEs but I did have joint pain for a few months and it eventually settled down. I am now one year in and would not say I had any SEs. Hoping that your SEs settle too.

Another possibility though, there are different brands of tamoxifen which have the same active ingredient but it is bulked up and coated with different things so you may not get the same SEs if you use a different brand. I had been a Wockhardt girl all along, but others had had worse SEs on this brand, and I was getting some aches and pains and I creak like an old woman, so I recently changed as a little controlled experiment with myself. I am now on Generics and am not getting any SEs. Could be coincidence but maybe worth a try?

Wandy, I do wonder why they recommend different hormone therapy for women who are so close in age. If I remember rightly you and I are about the same age and I was always told tamoxifen not letrazole. I am also e+p+ 8/8. I know pre- and post-menopausal women who take tamoxifen, so I wonder if you are really struggling on letrazole if they would not switch you to tamoxifen? Maybe this would offer protection with less effect on day to day life?

MG xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I am on Letrozole (Femara)and am having a terrible time. Keep thinking its doing me good, so I must persevere, was +8/8 ER/PR and feel that its probably keeping any recurrence at bay but...but... I am really struggling. The joint pain is excrutiating. I can barely walk at times, the sciatic pain in hips, knees, ankles is appalling. My shoulders and wrists are nearly as bad and at times I am beside myself with the pain.... (At times am popping ibuprofen like smarties, which I'm sure can't be good for me),Keep thinking it will improve and its doing such a good thing and so on....Not sure at what point I should say this isn't worth it?? Have been on it since October last year...

Can't offer any help, sorry, but just wanted to say I really understand what anyone else is going through.

Think I may talk to my bcn and onc and gp soon if things don't improve. Nobody really tells you about this do they?? I guess its because everyone's experience is different

Wandyx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have just started taking Anastrozole 2 days ago...I was on Letrozole and I was so Ill with it I wanted to end it all! I could hardly walk, the joint pain was excruciating, I couldn't breathe and I just felt terrible! I ballooned in weight and every part of me ached...I was convinced Herceptin was to blame I never once considered it to be the Letrozole. After a weekend of hell the pain was so bad I was offered morphine. my nurse contacted my nursing consultant who after seeing me took me off Letrozole for 2 weeks. She said she could tell just looking at my face that it was Letrozole...I couldn't understand what she meant by that. Sure enough over the 2 weeks the joint pain disappeared and so did the bloated ness although the breathing problems remain and my legs feel stiff and I hobble around like an old women I feel much better than I did on

I am dreading the next couple of weeks...in case the side effects I will no doubt have to Anastrozole are anywhere as severe as the ones I had to Letrozole. After chemo I thought I'd be over the worst...I didn't expect to feel as rough on Herceptin and Hormone Therapy! It doesn't seem fair...

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Same here - had to switch back to femara a few months ago after a bad time on letrozole. Had to persuade my GP as femara is a lot more expensive!

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Lexxie
Just wondering if you have a generic form of Letrozole!
I know ladies that were given these and were quite ill with them.
I was given them once, but told my gp l want to stay on Femara. Touch wood so far no problems with Femara, been on them for nearly two years.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Wow, this is scary. I was recently changed from Tamoxifen to Letrozole. It looks like I am really lucky as I have had absolutely no side effects. No wonder onc was so keen to find out how I was coping with Letrozole.
Good luck to the two of you

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

My Onc changed me from Arimadex to Letrozole in October last year. I had been on Arimadex for 2 years and had some SE`s, joint pain etc. I stuck it for 3 months and was worse than ever, like you nausea, flushes and joint pain plus no appetite. After seeing my GP, she has changed me back to Arimadex after 2 weeks with no tablets at all. Been back on Arimadex for 4 weeks, the nausea has gone and I feel better, not perfect but better, as the saying goes better the devil you know. All these meds have some SE`s unfortunately, its the roller coaster we are on. Hope things improve for you soon. Going into hospital through A&E as I`ve found is not ideal as we need specialist care. I would phone your BCN or ONC.
Pam

Member

LETROZOLE SIDE EFFECTS; PLEASE HELP

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!