Elke, have you tried changing the time of day you take your pill? I have been on letrozole for 18 months and still get nausea if I take it first thing in the morning without food. I take it with breakfast now and I am fine. My mouth does get dry leaving me with a horrid taste so I drink plenty of water which helps. I know some people take it at night to avoid problems with nausea. It's a pain isn't it but I guess it is worth it.
I have been on Letrozole (Femara) for 10 months now, and the worst side effect is constant nausea, together with a metallic taste in the mouth.
Has any of you suffered the same - and: if yes, will it pass, and when??
I must be very lucky as my side effects are minimal - the other good thing is that after only 6 weeks, my tumours have shrunk - when you think of the side effects of chemotherapy, this is a walk in the park alowwing a normal life - yes i get tearful sometimes, yes i have slight pain in my breast, underarm and lungs but heaven above, I am so grateful it has shrunk these tumours already. My oncologist was very encouraged by the results - the xrays taken in October and the one taken yesterday show the shinkage. I am very pleased.
oh thank goodness it's not just me! I started Letrozole eleven months ago after five years on Tamoxifen (with no particular side effects) but I have aged ten years! I have stiff joints and cannot easily get up from the floor without hanging onto something; I have sustained ligament problems in my knees; even getting up from sitting or from bed causes me to waddle like an old crone! My hair has become greasy and for the for the first time in my life I have an itchy scalp and dandruff. I was wondering whetherthe problem was stopping Tamoxifen or starting Letrozole, but I now see it is the latter. And I am sooo tired all the time!
I have been on Letrozol for about 5 months. Initially the joint pain was unbearable. The doc and I figured out that there was a interaction with my cholesterol med. He suggested I get off of the Letrozole and Simvastin for 2 weeks and then introduce the Letrozole back into my body by itself. Initially this helped the joint pain. But as time goes on and the letrozole builds up in my system the joint pain is back. In addition to the joint pain, I am now getting muscle pain in my hands, feet, shoulders and arms. I was an active 62 year old woman before BC. Now I feel like an old lady. I can't imagine feeling like this for the next 5 years,
Hi Janee 1760 - You are mirroring my experiences exactly. Can you tell me whether you have actually stopped taking the letrozole? I am now in such discomfort with tightened skin and aching joints that i really can't face the remaining 7 years of my 10 year prescription. When I told the Oncologist that I was depressed she prescribed anti-dpressants ......however, I chose not to go down that route, feeling that she had totally missed the point. How are things with you now? Has anyone out there had the courage to stop taking the letrozole? I would love to hear all opinions. Best wishes and support to all.
Hi Ladies, I have been on Letrazol for about 9 months now following lumpectomy, sentinal lymph nodes removal & radiotherapy. I get hot flushes and joint pain - my Oncologist suggested Cod Liver Oil for the joint pain and Evening Primrose Oil (high dosage - I take 2 x1300mg daily) for the hot flushes - they both help but are not a cure-all. My biggest problem is lack of sleep. BC Nurse suggested taking the tablets in the evening rather than the morning which I think also helps but I am just soooo tired. I take herbal sleeping tablets which give me about 4-5 hours sleep on a good night but it's just not enough for me to function well on. I am persevering as I read that Letrazol is about the best for keeping the cancer at bay and I am scared to switch to an altrnative and get it back again. Any suggestions? Keep strong ladies xx
I have been taking letrozole for approximately six months. I now have severe pain down my right leg and it is only getting worse after five weeks. I have had X-rays, MRI's, nerve tests and no one has A
diagnosis. For short term I was given pain medication that made my life more bearable but they won't give me any more due to it's addictive
nature. I was taking oxicodone, Valium, and prednisone. This combination worked
I was given injections in my arms and in my rear end. And the list of other drugs that I have tried which I won't describe here have done nothing for me. My pain is so unbearable I would rather die than go ahead like this.
I am stopping the letrozole and I'm going to have a bone scan tomorrow. I hold out no hope .
I have been having terrible leg pain at night for months. I lose lots of sleep. I quit femara for a few weeks and it didn't get any better. It seems from reading that it may do some long term effects and stopping for a few weeks may not accurately say that isn't what is causing the pain. I am 50 and feel 80 many days because of joint and leg pain. Becky
Ruth, bless your heart. I just finished after 5 years with numerous side effects from letrozole. I have been having major dizzy spells since about 6 months after I started it. I starting having really bad stomache pain for no reason so my General Doctor put me on digestive enzymes which really helped. But, I didnt put it together. Swallowing problems where all my medicine would get stuck going to down and had to chase it with other food. Went to a Gastro Doctor he did 3 upper GI's and 1 lower found no problem, never put it together since taking letrozole. He had me taking a medicine that was illegal in the states because people had died from it. I could only get it in Canada. 132.00 a month. Bad neck and base of the scull headaches. Hurt in every joint, swelling in every joint. Omgoodness not sleeping at night. Waking up so dizzy and just feeling like I had been hit by a mac truck. Also, POTS postural orthostatic blood pressure, fibromyalgia, and miss diagnosed with Scleraderma which can kill you. Never thought anything until I just passed out in May at work hit my head and loss my job due to all my health problems. So I went to a IGNORANT Neurologist that did some tests all where good and I told him I still wasnt feeling right. Asked him about letrozole (femara) he said I dont know not my field. Gave me Valium, and Cymbalta to take said I was crazy and it was all in my head.Needless to stay, not going back ever. So I went to my oncologist she said this little pill could have very well caused all of these things. I had just went alittle over my 5 years. She took me off of it. Things haved cleared up incredibly still just a tiny bit of headaches in the morning but thats it. Oh yes loss the hair too. Get Biotin take 10,000 mcgs a day. its back with a vegence. Ruth letrozole (femara) is a Chemo Pill I guess they told me and I didnt pay attention. Get off and stay off. Im a cancer survivor X3 Breast, thyroid and uterin and not in my family at all. O just saw a natural doc say 97 percent of chemo patients it does nothing for. Sweet Lady God Bless You and hang in there please put in your search engine on the internet letrozole and you will see come up. Letrozole_chemotherapy drugs get on there and look at all the side effects. I WILL NEVER AGAIN MYSELF do it. I did also the 33 treatments of radiation. It was hard but not as hard as this killing medicine. God Bless You
Hello , my name is Ruth , I have had my surgery, had 3 weeks of radiation, but I can't take one more day of femara. Over the first 3 weeks on it I became a sweating crying mess. By week 6 I told the oncologist where to shove em.
i had no periods for 9years now but on femara I had period pains, sweats, crying , temper tantrums, the oncologist has agreed I should stop taking them a week ago and I'm back to normal. No sweating,crying,cramping.
Going back to see her on the 29th of July to see where I go from here.
my very best wishes to all in our club.xx
I too have had 4 instances of tendonitis and I think another problem starting with my hip. This is all since October and I have been on letrozole 11 months now. The young oncologist last week said to me "How can you be sure it is the drug?" But at least he referred me to a rheumatologist. A physio I saw in Florida for these injuries/issues said that he thinks people taking many cancer drugs including Letrozole seem to be more susceptible to reptitive strain type injuries. It is very very frustrating. A year ago I felt 40 (age 59) and now I feel 80. I have also been referred to the Homeopathic Hospital at Queen's Square (London) to see if they have any suggestions for the joint pain and menopausal symptoms. I have found that heat - bath, hot water bottle, hot tub on holiday all help the general joint pain, but I think it will be continual physiotherapy and exercises that repair the "injured" tendons. You are not alone! Just keep trying things and sharing information.
Hi , yes I've taken citalopram with Femara for 5 years .. They seem to work well together ... Now reduced to Half a citalopram , as trying to wean off them . Good luck x
Hi fellow Letrizole users
I have been taking Femara ( not the generic ) for 5 years now .. I'm actually due to stop them .. A wee bit scared to stop the drug as I am told it wards off the oestrogen .. Had no biggy side effects apart from a bit of mood swing , which a small dosage of citalopram does the trick . Just had a bone scan .. All good .... However of course long term taking of any drug has its side effects ... There have been trials to incorporate tamoxifen and Femara .. i think it was called the Atlas trial ? ... Anyway bottom line I think is listen to your body ... An Oncologist I visited this week is happy to keep me on them for a further 5 years ?? But the question is am I a Guinea pig ? yep have a big division to make ... Look on the Internet and check out the serious " the truth about cancer " phew it blows your mind . Are all the drugs they are dishing out poisoning us all ??
Hi, the side effects from femara have definitely got worse for me as time has gone on. I'm been taking letrozole just over a year now and the pains I have are no laughing matter. I have a really sore hip that I've plucked up the courage to get checked, but fingers, elbows, feet, knees are all so sore too. I also have thought for the last couple of weeks that my hair was thinning, only for my 10 year old to just tell me there that I'm going bald again!!!! I also recently started having hot flashes, something I haven't had up until a couple of months ago. It's just never ending xx
I have been on letrozole 12 mths and can cope with the hot flushes but the pains in my hands and now feet are becoming intolerable - getting worse, not better. I currently have severe tendinitis in my left ankle and foot and can hardly walk, my hands are almost unusable when I wake up. I identify completely with the feeling that I have suddenly become old, stiff and moany (previously fit active 60 year old). The only thing that works for the pain and stiffness is to keep moving regularly (except the tendinitis which gets worse). I use ibuprfen gel as don't want to take painkillers/NSAIDs regularly, only when desperate.
Has anyone had any benefit from cod liver oil caps please? Any other magic solutions???!!! I will persist in the hope of keeping the cancer at bay but sometimes I really wonder if it's worth it. Moan over.
Hi I'm also having aching joints I have been taking letrozole sine March this year. I would be interested if any of you ladies are anything along the letrozole to help the joint problem eg. Cod liver oil?
Hi ladies, I have been on zoladex and letrozole since December 2015. At first I was given generic letrozole but I think about April I ask for and was given Femera as I'd heard it was the best. I can't say I feel any different with the change of brands, they have all given me severe joint pain. I am like an old lady getting out of bed in the morning or getting up if I've been sitting for a while. My little boy says I walk like a zombie!! I was a fairly young looking 51 year old but in the last year I have aged at least 20 years. I was so fit and healthy before bc, the meds have certainly taken their toll on my body. I would never not take them though xx
Hello Sarah NOLA
I've been on Letrozole since February 2014. I didn't recognise my symptoms as side effects at first as so much else going on (tests, surgery, etc) and felt that flushes/ mood-swings were part shock and part relief that the cancer had been discovered (hopefully in time). Joint pain however reached the "unbearable" stage. Over the next months I was given 3 or 4 different makes, and only recently persuaded my GP to specify Femara for a trial period to see if joint pain improves having read on this site of so many others in my position. I'm now on my 3rd pack of Femara but difficult to tell if it has helped as I've now been diagnosed with Osteoarthritis. I wonder whether the tablets have weakened my joints, as my knees frequently "give way". Feel I've aged 20 years in 18 months but trying to remain positive. I can cope (just) with the flushes and mood-swings. Will post again if I feel the change in meds has helped in any way. Sorry for the long post!
Best wishes, Poppyj
Hi sarah I have been on letrozole since march 2015 and for me the joint pain hasn't subsided whatsoever I daily take an ibuprofen and try and walk at least a couple of miles a day it is such an effort and same with me getting up in a morning or when I have been sat a while last month I had a bone scan as a precaution as the joint pain was so bad thankfully it came back clear I have had a chat with my lovely breast care nurse and she said I could change to tamoxifen if I wanted I'm dubious and can't decide whether to or not also my cholesterol has gone up another side effect of femera but then it's a catch 22 as this tablet is hopefully keeping the cancer at bay love judi x
I would like to hear from those who have been on femara for a long time, does the joint pain lessen?
When I started taking femara in June 2015, I had the "pizza oven" side effect; within an hour of taking it, I felt as though I were being baked in an extremely hot oven, different from a hot flash. I was pleased when that sensation just faded to the point where it is totally tolerable.
But now, more than five months after I started the medication, the achy joints side effect kicked in. And the term "achy" does not do the feeling justice; when I stand up after sitting for a while, or start descending a staircase in heels, I feel as though my joints have come completely out of their anchor, are not functioning. My arms feel heavy, from my ankles to my neck, I feel as though someone had thrown acid on each joint.
When I was diagnosed this year, I was a women in her fifties defying her age, feeling my best, athletic and flexible, no typical signs of degeneration or slowing down. Half a year later, I feel, as many women have posted, twice my age. I can't sleep, I wake up crying, it takes me forever to get out of bed, my brain is fuzzy (don't know if that is the lack of sleep and tolerating this pain, or whether it is another side effect).
Like so many other women have said, I feel my quality of life is shot. I don't know if I can stay on this medication to hopefully eke out a slightly higher chance of avoiding a recurrence. Can anyone tell me whether the joint issue abates, or whether it stays this way.
you sound like you're having a horrible time - did you know that there are alternatives?
i swapped from femera to exemestane a few months ago after i got fed up with thr femara - hot flushes & night sweats despite even more meds, impossible to get any weight off
i swapped to exemestane & am doing better with it - not perfect: worse for teenage acne & still affecting my weight but the joint pain is back down to mainly the wrists so not competing too much arthritis
like you say, feels like we've got to manage one of them, so it's worth experimenting to find the least bad option
Thank you \lucy, my sentence should have read, 'I dont feel depressed'I missed out the word 'dont'feel depressed.Maggie