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
A change of brand may help but donāt forget that the active ingredients are the same so if itās 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. Iāve been taking Letrozole for 2 years and the joint pain has gradually subsided so I hope itās 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.
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.
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 couldnāt 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. Itās a very effective drug whatever colour the packet and constitution of the coating. Well, anyway, I like to think that itās very effective because I donāt 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.
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, donāt need them anymore and only wish Iād known about the full tummy earlier, best of luck to you xx
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 seās I get considering the results of taking it.
L XX
Yep - itās good stuff. My friendās 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.
Hi,
reading this had made me feel iām not going mad !!! iāve 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 wasnāt 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. Iām 39 years old and my body just feels so old.
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.
Hi everyone, thankās for all the infoā¦so good to know iām not alone! I havnāt 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
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.
Hi
I just wanted to offer another view.
Ā
Iāve just passed my 5 years on femara and am on them for another 5 years. At first Ā I thought āI canāt do this for 5 yearsā¦itās as bad as chemoāā¦but after a few months the side effects gradually eased. Ok, Iāve put on weight, my libido is zero, my bone density has decreasedā¦but Iām still here & Iāll gladly put up with the side effects that I have as an alternative to stage iv.
Ā
I do feel for those who have horrendous side effects, but there are some who donāt persevere and give up at the first hurdle.
Ā
Ā
Hi
I just wanted to offer another view.
Ā
Iāve just passed my 5 years on femara and am on them for another 5 years. At first Ā I thought āI canāt do this for 5 yearsā¦itās as bad as chemoāā¦but after a few months the side effects gradually eased. Ok, Iāve put on weight, my libido is zero, my bone density has decreasedā¦but Iām still here & Iāll gladly put up with the side effects that I have as an alternative to stage iv.
Ā
I do feel for those who have horrendous side effects, but there are some who donāt persevere and give up at the first hurdle.
Ā
Ā
Bone thinning when taking AIsā¦ I was prescribed Adcal, only took them for 4 weeks, couldnāt 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 thatās what I do now. Clinic happy with this strategy. Might be worth a try.
Grumpy
Hello everyone. Iām not sure how many men you have contributing, but Iām sure Iām not the only one.
Ā
My lovelyĀ wife was diagnosed with Breast Cancer just before her 40th birthday in December 2010. She had 9 months of Chemo which included Herceptin andĀ Docetaxel, Radiotherapy, and Ā a mastectomy with lymph node removal. This wasĀ followed by a couple of years of Tamoxifen.
After suffering abdominal cramps, she had both Ovaries removed due to cysts, (Iām convinved this was the start of Ovarian Cancer caused by Tamoxifen.), but no one ever biopsied them. I still wonder why.
Ā
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.
Ā
WeĀ 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 !)
Ā
She is in constant pain from her finger, elbowĀ and knee joints. Walking, flipping the bird and elbowing her way to the bar all cause her pain.Ā 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 activityĀ . Then there are night sweats - but she complaints of being cold most of the time. She has nightmares and mumbles and shoutsĀ 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, Iāve slept mainly in the spare room to increase the chance of at least one of us getting some sleep.
Ā
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.
Ā
Now she struggles to remember the dogās 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, ātea potā, āskirting boardā and ābutt plugā just for a laugh.Ā She is definately going to win at Christmas - unless she forgets the name of the film / book/ TV programme.Ā Our friends are all called āThingyā or, āYou knowā¦your mateā¦ā 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.Ā When it doesĀ arrive, sometimes its coffee.
OK, some of this is an exaggeration, but its gone on for so long nowā¦
Ā
And sheās got so aggressive and argumentative. (sheāll deny it).Ā Most husbands are wrong at some point. Iām wrong most of the time, and probably wrong for the rest of it too. I can never win an argument and minorĀ discussions normally turn south.
Ā
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).Ā 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 theĀ 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.
Ā
After keeping it all together for five years, running around all the hospitals,Ā bringing up our child, keeping house, running a Sea Cadet Unit andĀ holding down a full time job as a Police Officer on shifts,Ā around about Christmas last year,Ā I had my own quietĀ 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.
Ā
Iām not sure I can stand to watch another five years of these side effects or the continual detriment to her health.Ā Is Osteoporosis, Dizziness, Joint pain,Ā and deteriorating mental health worse than secondary breast cancer?
Which is going to extend her life expectancy or degrade our quality of life.?
Ā
Is there any alternative or are we stuck in a Catch 22?
Ā
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.
Ā
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) Ā 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 donāt 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!
Unfortunately all the hormone therapies have side effects and sods law ā¦guarantee I get them all at some time !!
Itās 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 ā¦ Iām getting fed up with different ones and am asking doctor to mark my prescription for āaccordā so at least I get the same side effects!!
Carolyn xx
Hiya Rosie
Itās a great site for support and info isnāt it? Yr so lucky living in Cyprus ā¦Iāve been there on hol and my son is going on Sunday for eight days.
I think I donāt 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 ā¦get a bit muddled with vits.
Its a struggle with these things but needs must.
Xxx
Just look at the packet or box they are in and they will give the manufacturerās 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.
I have put on weight. Does anyone know how to counteract this?