Annie, just wanted to say sorry to hear your news and send you a hug through the ether. It's all very unfair. Hope you get access to the best advice and treatments and have many more years to enjoy. Xxx
Hi Sgagliardi, I'm not on your regime but sending you a big hug and acknowledging your post. I know where you're coming from as I was told on Thursday I have lung mets, and I'm just coming to the end of my radiotherapy. Absolute bummer, isn't it? My Onco was very upbeat about it all, easy to treat and lots of options. I'm on Letrozole at the moment, and it looks like I'm going onto a new drug that's only been out for four months. Two Oncos can't be wrong, can they? Onward and upward, then. Well just learn to live with the cancer, but we'll be damned if we're going to die from it! X
Pammie - how are you getting on now? I have been on letrozole for about 3 months and I am still getting daily headaches (as well as hot flushes) - I have been told that I will be on Letrozole for 10 years - so I am desperately hoping the headaches will go away soon!
I had that for a while, but after a few months it wore off. Make sure you drink plenty of water xx
An update about my experience with Letrozole.
I have been taking it for just over 2 years. I reported vision problems in a previous posting. My opthalmologist now diagnoses my problem as glaucoma and says there is nothing at all to link it to the Letrozole. However, the cancer team suspended the Letrozole for 6 weeks. During this time I re-took the Esterman driving test, and this time I passed. This may, of course be entirely co-incidental. I only managed to find a few internet references to eye problems and Letrozole and they mostly linked to the same researcher in the US. Neither the Opthalmologist nor the Cancer team seem to feel there is a real link.
However, the cancer team have said it will be OK fin my case to stop the Letrozole. This is because
(a) I have already taken it for 2 years
(b) I will already have derived key benefits during that time
(c) Because my cancer was very small grade 1 with clear lymph nodes, I am very low risk and the added benefits of Letrozole are relatively low
(d) I have mentioned other side effects which I have found more or less intrusive.
(e) There is a "legacy" effect to taking the drug - this lasts for approximately as long as the period of taking it.
It seems that whatever the drug, there will be real problems with identifying side effects. Some from Letrozole are obvious, and commonly mentioned - joint pains, for instance. But some of them are similar to what to expect from growing older. For instance, I have been losing hair while taking Letrozole, but I was also losing some hair before I started taking it. I also found it difficult to identify what was going on during the six week period when I stopped the Letrozole. It is not easy to identify when something isn't happening. Certainly, I didn't experience the "trigger-finger" effect, and my nails may have seemed stronger (as I am still taking calcium tablets). I don't remember getting any cramps during the time off the drug, but I suddenly got one soon after I restarted.
One thing that I have been wondering about is whether the side effects develop or build up over time. This was questioned in another post. After 1 year of taking the drug I went through a six month period of strong abdominal pains and bloating. Investigative tests revealed nothing. At the time, I described it as a very severe period pain. This seems to have been cleared up by adjusting my diet and reducing/eliminating gluten (an easy diet option to take these days). I was later told that I had been tested for gluten intolerance and I was OK. However, it seems that any change to diet may have an effect. I also noticed it seemed relatively easy to lose weight (though in the past it had been harder). I lost 5k in 3 months without trying too hard. Since stopping the Letrozole, I am slowly putting this back on. Could this possibly have been due to the Letrozole, even though it didn't kick in for over a year after starting the drug? The vision problems (which may not even be a side effect) started about a year and a half into the drug regime.
It seems impossible to disentangle these changes in the body. After all, time passes and the body ages. I am very grateful for all the medical attention and treatment I have received. My concerns have been listened to and taken seriously. We have to take responsibility for looking after our own bodies and adjusting our life-styles.
At the end of the day, I am grateful for screening -
I just hope that nothing else goes wrong!
I sympathise so very much, always looking for someone who is having the same side effects, ie, like you, nausea. Have been on Femara for one year now,hoping it would get better. On the contrary, it gets worse. Can´t stand the sight, thought of food either. I am going to speak, again, to oncologist on 25th. He said, three months ago, that I could take Primperan, although my GP disapproves. They do help, nothing else does, but I am concerned about the long-term side effects. How I am going to cope for the next 4 years, heaven knows.
If you find a solution,please let me/us know. Thank you.
Best wishes anyway and xxx
Ihave been on Letrozole for over 2 years.since being picked up as needind a mastectomy by a routine scan,When my camcer surgeon said it would give me symtoms of menopouse I was sanguine because all had I ever ex perienced was mild forgetfulmess..
I was not prepared for hot flushes, sleeplessness, skin rashes, hair loss and joint pain.
Whilst awaiting scan for bone density, I find daily calcium/vitamin D tablets help joint and pain and hayfever Cetriziene helps hot .flushes
. My surgeon recommended very expensive thick and thin shampoo and condittionerfor hair loss blocking the shower.
A new doctor asked if I knew I has serroboeic dermititus? No but that explained the dry skin on my forehead any eyebrows and itchy scalp. Now hair loss and skin rashes are better with the prescribed shampoo and skin cream.
My surgeon also recommended taking Letrozole before bed so symptoms might take place whilst sleeping.
This works sometimes.
Thank you, Carolyn.
I have seen a member of the cancer team. He took my vision problem very seriously. He thought it possible that the "fuzzy vision" mentioned in the drug leaflet could have quite a broad meaning, and it was possible that the drug was affecting my eyes. He suggested that I stop taking the Letrozole for 6 weeks, then start again and have another check up at the cancer clinic. This way it may be possible to work out what happens when I stop the Letrozole and what happens when I start it again.
I have had photography of each of my eyes and am waiting for an MRI. It is obvious that one eye is worse than the other. The opthalmologist will see me after the scan.
I noticed that the brand of Letrozole is indeed Cipla. I have been taking it in the evening. I am quite short-sighted so not too aware of blurred vision, as my long distance vision is always blurred!
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:
Waiting to see an eye specialist and the cancer team. Would be very interested to know if others have had a similar problem.
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
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?
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?
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 .
I have put on weight. Does anyone know how to counteract this?
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!
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! 😏
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
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!!!!
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!
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.
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
i think my mine is just over reacting , I will try and see my oncologist after Christmas to have a chat with him xxx
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
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?
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.
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.
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.