It's very good that your BCN is kind, sympathetic and ready to act as your advocate; don't every feel that you shouldn't contact her because other patients have a greater need, you are just as important as everyone else.
As for Macmillan, it's not necessary to have been asigned to them by your hospital in order to obtain help from them. You can phone them on their advice line, Macmillan Cancer Support, at 0808 808 0000, and find out how they can help you in your part of the country. A friend of mine who lives in a rural village in North Yorkshire, who hadn't been assigned a Macmillan nurse either, contacted them and was able to arrange for weekly home visits from a Macmillan nurse who gives him counselling sessions to help him cope with everyday life. He has cancer of the bone marrow, but at present is still able to live a reasonably normal life and can still drive. Thanks to this nurse, he is able to keep more cheerful and make good use of everyday to his satisfaction, whilst allowing for fatigue and other limiting factors.
All the best, and I do hope you can enjoy some pain free time.
Your comments have been taken on board, but again unfortunately a Macmillan service was not offered so I am really on my own with this.
My surgeon offered a bone scan to see if the cancer had spread to my hips as I had pain (from osteo-arthritis). I agreed to it, but when the appointment arrived, it was a 3 to 4 hour wait between the injection and the scan which could take up to an hour lying still without moving.
No contact to be made with another lady to pass the time to talk to in case she was pregnant or had a small child in tow, as I could be giving out radioactive something or others. I didn't like the sound of all that, so after discussing it with my BCN, I asked her to cancel it, and she agreed immediately as she had that scan herself and knew what it entailed.
I will try it later as the surgeon can reinstate it.
Best wishes to everyone.
I agree with everything you said, specifically re-biological depression and the possible effects that estrogen depletion/endorcrine therapies may have on these particular individuals. I also agree with what you said re-women who have predisposing hormonal imbalances. It shouldn't be a "one size fits all" approach with these meds, but sadly it is. I'm also really pleased to hear that you had a clinician who was able to advocate on your behalf.
Side effects, indeed, need to be taken seriously, and I also agree that quality of life is important.
We all have to make decisions that we feel are best for *us*, and I ditto your final sentence-we will all die someday.
Marla, I am sure you are correct that there are many factors to consider when explaining side effects different women experience with individual AIs and with Tamoxifen.
Not only does smoking and obesity (as opposed to mild over-weight) contribute to a range of health issues, but other cancer treatments can cause long-term problems. There is evidence that women who have had chemo involving taxanes are more likely to get more severe joint and muscle pains with endocrine therapies than women who have had no chemo. (I'm not suggesting people should avoid chemo for that reason. )
There is also the question of how oestrogen depletion affects individual women. As all endocine therapies are designed to block oestrogen by some means, this is something to take into account, along with possible long-term effects of oestrogen depletion on the body as a whole, including the brain. Again, different women are likely to have different medical profiles. A specialised nurse on the Breast Cancer Care site told me that most women who have a history of depression find they have to come off endocrine therapies. I'm referring to severe depression of a biochemical nature, and not the general distress of having cancer or dissatisfaction with everyday life.
Having been on Anastrozole for 9 1/2 weeks, and having eperienced a gradual increase of the severity of a range of side effects to a debilitating level, I stopped taking it. My BCN referred me to a clinician in the local Breast Clinic. The doctor, who had specialised in cancer treatments for 20 years, took my concerns seriously, especially as I have a long history of problems with hormonal imbalance: PMT as a young woman, the menopause, HRT, coming off HRT (I was ill in bed for a week) and then having to cope with the menopause difficulties without any assistance, which took some time.
The clinician wrote a very helpful letter to my Consultant Oncologist (I wasn't due to see him, or more likely his registrar, until the end of January), asking him to give me an appointment to see him personally within the next few weeks, with a specialised pharmacist present.
The clinician was disarmingly honest, said she knew very little pharmacology herself as she left it to the pharmacists in the cancer hospital, and that I needed specialised advice which she couldn't give. She also obsered cheerfully that very few doctors know much pharmacology and, as every patient is different, the approach is to prescribe one drug, and if that causes problems to try another, until a medication is found which the patient can tolerate. She observed, with a big smile, that the knowledge held by the medical profession is very limited in comparison to what is unknown.
Another problem is that pharmaceutical companies, on whom research depends, focus their research on the benefits of their products, and do not explore the adverse effects. So, adverse effects are picked up on and listed by a gradual process during trials and through the yellow card scheme. I have been told this by a consultant pharmacologist whose research is funded entirely by pharmaceutical firms. New drugs, once licensed, are strongly promoted by their manufacturers as the research is very expensive and the pharmaceutical industry needs to recoup the money they've spent, promptly.
Before trying another endocrine therapy, I shall be weighing up very carefully the possible benefits against the probable problems, especially those that are likely to be long term, taking into account my medical history. Quality of life is extremely important to me. There is no point in making myself ill to the point of being dependent on other people, simply to extend life by a few years.
The reality is we all have to die some day.
Just to add: I think that whether a woman experiences some of the side effects (i.e., joint pain) may also depend on their pre-Letrozole health, and mobility, etc. For example, I have osteoporosis in my family, though I haven't yet had the bone density scan (my oncologist is not in a hurry to scan me:)), and so I don't know if I have osteoporosis, *but* I have always been relatively "supple", and flexible, in good physical shape, and my BMI is at the high end of normal (I love a potatoe)!. So I'm not obese, I *am* in the normal weight range, but high end of normal, and just wonder whether joint pain is related to BMI or weight? I'm only putting this out there because my mother has severe joint pain, bursitis, is awaiting a double hip operation (both hips) and is overweight. Her weight and pain make it hard for her to mobilize. And so I see what weight can do to one's overall health. It's just a thought. My main point is that I think it's really important we consider *all* possible factors in what might be contributing to a particular side effect, before concluding it's the Letrozole.
I couldn't agree with you more re-the side effects one experiences with Letrozole depend on how far into the menopause they are and whether they were on HRT. I've never been on HRT and was confirmed "post menopaussal" when I started Letrozole. I probably had very little estrogen in my body when I started on Letrozole. I haven't had a hot flash in months if not years and if I do get any now, they are short-lived (over within 20 seconds)-it's more like a "wave" of heat, but nothing my A/C (in my car), or a hand held fan can't help with.
I just thought I'd throw my two-penneth in because I, too, am on Letrozole (about 2 weeks in) and luckily, bar the occasional joint pain (on a scale from 0-10 it's a 5-6 but duration=2/10 so very tolerable), I just wanted to pick up on:
"Now the side effects have stepped up, but surely this is confirmation that the drug is working properly".
No, this is not necessarily the case, because this would also suggest that women who are not experiencing side effects (SE) are not gaining the full benefit of the drug, i.e., the drug isn't working.
It's a myth to think that side effects mean a drug is working and the lack of SE's mean it isn't. I just thought I'd point that out. Some women have SE's and others don't but this is not an indication of whether the drug is working. You'd want to have further ultrasound scans etc. to check whether the cancer is shrinking. I understand that Letrozole has been shown to shrink cancer (not all cancers, but some, i.e., ductal ones if I'm not mistaken) and a scan would be the way to assess whether the drug is working-not the side effects.
Firstly, many thanks for the info regarding the size of the tablet. It did not occur to me about the extra packaging. That's a relief and very helpful.
Your comments re. website information contradiction makes sense also. Yes,I could make an appointment to see the oncologist but the clinic at my local hospital has been moved to another hospital across the other side of the city. This hospital is huge and I hate to "take a seat" for an hour waiting time. It is at least a two week wait to get a GP appointment just for advice when dozens of patients want appointments more urgently than me
Another thing, a lot of the cancer forum threads are from ladies whose oncologists have told them to take a month or more holiday from taking it. Or they go away on holiday and do not take it until they return after three weeks or so (and dread starting it again)
I will do my very best with this new drug.
I am in the UK too, and am fully aware it is possible for breast cancer patients to obtain information and advice from their Oncologist and GP by making appointments. I do this myself. Your BCN can assist you to do this. It is far better than relying on 'advice' from Internet sites and forums, which can be seriously flawed.
As for research on the Internet, reputable sources of information such as Breast Cancer Care, Macmillan and Cancer Research UK, all advise patients to keep to the full dose of endocrine therapy unless otherwise advised by their Oncologist. They advise against lowering the dose.
If a patient has forgotten a dose of their AI, Breast Cancer Care and Macmillan booklets advise not to take an extra pill because some of the previous dose is still in their system and they would than have too much of the drug, which has its own dangers. This advice does not translate into 'it's all right to lower your prescription and have your pill on alternate days'. They are simply saying that if you miss a dose, it is better to wait for the next time it's due and be slightly low on the drug for a few hours, rather than overdosing. They don't mean you can keep skipping doses; they all say that to do that can decrease the protection given to you by the drug. They strongly advise that you should keep to the stated dose, unless otherwise advised by your Oncologist or GP.
There are many Internet sites which hand out misinformation and are not reliable. On researching online, it is advisable to keep to the NHS, the Lancet, NICE and the BMJ for searches.
All the best.
After reading the information booklet given to me by the BCN, I did hours of research both on anastrozole before taking it, and also on letrozole.
Below is the thread I posted re. anastrozole side effects.
"After having two lumpectomy ops. I have been taking anastrozole for five months.
Hours of research revealed it is a very powerful drug and very effective at blocking estrogen production. Also that if a dose is missed, there is sufficient in your system from the day before. This is also stated in a booklet the hospital breast care nurse gave me.
The website said that estrogen should be controlled not squashed and that 1mg on Mon/Wed/Fri would be sufficient.
I started with 3 to 4 tabs. a week for one month, then tried 2 days with and 1 day without. Now the side effects have stepped up, but surely this is confirmation that the drug is working properly.
The doctors will simply prescribe 1 mg. a day to one and all, as it would be time consuming to say start slowly and build up the dose gradually. but I thought it was worth a try"
Here in the UK. we do not have oncologists to informally chat to. We only have the BCN. We cannot informally chat to the GP either.They have not got the time or the know-how. I always research on-line any new drugs given by the hospital or GP before taking it.
You have specified a rather unusual regimen for taking Letrozole. Do you mind my asking, is this an approach advised by your Oncologist or BCN, or is it something you have arrived at yourself?
It is very important to take medications in the manner we are advised, or they might not be effective at all. Different drugs will have different doses to allow for differences in their chemical nature. Some medications need more packing in the tablet than others, so will be administered at what appears to be a higher dose. It doesn't mean that a drug given at a higher dose is going to be more powerful or have worse side effects than one at a lower dose. You might find it helpful to ask your pharmacist about this - I'm sure they can put your mind at rest.
The half-life of a drug is the time required for the concentration or amount of drug in the body to be reduced by one half. It doesn't mean there is enough in your system to skip doses, in fact it is very unwise to do this unless advised by the doctor supervising you. (Forgive me if you are acting on your Onc's advice.) For some drugs to be effective, it is important to maintain a particular level in your system.
You do need professional, expert advice on this. Your problems with Anastrozole could relate, at least in part, to the effects of oestrogen depletion and not purely to the drug itself. Perhaps a specialised pharmacist could help you with this.
All the best
Happy Monday Rosie,
was as wondering how your doing, just stopped taking the dreaded Letrozole after almost 3 years, feeling so much better after 3 weeks a little frightening at time asking myself am I doing the right thing ??
Wishing you you lots of luck Tili x
I am starting on letrozole this week after stopping anastrozole (Arimidex) after six months because of evil side effects. I am going to take it every other day for two weeks, then I will take it two days then miss a day for two weeks and so on.
I did this with anastrozole but I could not manage 1mg a day of it. All the side effects kicked in big time after two months of slight s/e's. Really awful time.
Letrozole has a "half-life" of two days, meaning I can safely miss a dose because there is enough in my system from the day before. According to the little booklet the breast nurse gave me, letrozole can diminish or even shrink existing tumours.
I am worried about the dose being 2.5 mg whereas anastrozole was only 1 mg. Can anyone help me on this please? Is it a more powerful drug which can turn out to be worse than the anastrozole (anasty tablet).
Going back to your first question, I agree with Loolarch and Sandra49. Most people are drawn to a web-site like this once things have started to go wrong, so the comments are bound to be more negative. You are unusual in thinking ahead and looking for the pros and cons.
I took Letrozole for about two and half years before I realised I was in trouble. During that time, I was regularly asked how I was getting on with Letrozole and I thought I was OK. It is difficult to tell the side effects of the drug from the effects of the menopause. I was 69 when I started on Letrozole, so way past the menopause. I only gradually realised that I was getting more cramps in different places and feeling in more of a fog than before. Was this menopause? was this ageing?
Two things made me question the drug. I developed glaucoma and was worried there could be a connection with the Letrozole. The cancer specialist went through the assessment tool with me. The connection with eye problems is possibly not really there. Also, it seems the preventative effect of Letrozole is highest in the early years and decreases as time goes on.
The other factor which un-nerved me was that I began to lose weight without really trying. You might have thought I would welcome this, but after a few weeks and a few kilos, I got scared. I have put back some weight now I have stopped the Letrozole. I think I have lost muscle mass, but sadly not the fat. I continue to take the alendronic acid and combined vitamin D/calcium to prevent against incipient osteoporosis. I still get annual mammograms.
This forum has been very useful. It has put my feelings about the side effects into perspective. It is all very individual. However, the drug is a very powerful one, and I would have benefitted from more explanation on how to cope with its effects from the beginning. I signed consent forms for surgery and radiotherapy, but nothing similar for the drug regime.
Pippi - I wish you the best in your treatment. It is good to hear what others have to say, but ultimately the decisions have to be your own. Good luck.
I've been on Letrozole for three months now (two different brands so far, and no difference between them) and side effects have been very little problem. I do get hot flushes but no worse than I experienced during menopause. I think Its likely that people who are having little or no problem are probably not even looking at this forum, let alone posting, so you might get a biased view of the likelihood of problems.
Good luck xx
Side effects have got a bit better on letrozole. I also think the impact is very dependent on how far into the menopause that you are. I think I also suffered horrible symptoms at the beginning because before being diagnosed with breast cancer i had been on HRT for two years. So the combination of losing HRT and a drug that takes away oestogen was pretty grim. I did also get bladder infections at the beginning. Symptoms have got better over time although there is an ongoing impact on my bones and I am do get more sweaty and tired (though tiredness could also be down to the surgery). As I have mentioned in an earlier post I do not think I will be on Letrozole for 5 years but might be on the drug for 2 years (which I understand is the most productive time). So you may be lucky and you may not get many symptoms or they may be controllable. Whether you stay on the drug is a different matter - and that I am sure will depend on your risk factors and the impact of the side effects.
All the best.
I have also been stuggling with Letrozole which I started to take at the end of May.
I had a second opinion from a different oncologist about the need to take the drug and how long. She also went through the NHS predict tool about reoccurence. Basically Letrozole is about protection from reoccurence. You are entitled to get a second opinion which I found really helpful
I have also returned to work and I am struggling with tiredness and pain in my joints. I will be taking a view going forward iwhether taking the drug is tolerable to my quality of life. I may also ask to try another drug in the Letrozole family. I will also consider whether I take the drug for the full five years. I doubt whether I will as I have a low risk of reoccurance although the drug is protection for the longer term (15-20 years). Apparently the drug does the most good in the first two years (they say 2-3). The predict tool helped me really see my risk and allows me to think about my risk of staying on and coming off the drug. Infact even though i am low risk I am prepared to stay on with the drug and have the side effects for the time being.
So you might want to get a second opinion including using the predict tool of your own circumstances.
I am in exactly the same position as you and on the same drugs. How are you getting on now?
Interested to hear that the change of brand of the Letrozole made a positive difference for you.
It is indeed a very powerful drug with a variety of side effects (none of which seem to be good). I would be interested to know what vision problems you have been experiencing. Since you are also suffering migraines, it sounds as if the vision is associated with that.
I have experienced problems in my field of vision and have been diagnosed with glaucoma - this is apparently a slowly developing condition, yet it developed within 2 years' of my starting Letrozole. I suspect a connection with the Letrozole, but since few patients seem to report vision problems, it is difficult to establish if this might be the case. I hope that your vision problems, like the migraines, are only temporary.
My vision problems however, are not temporary. I am now suffering daily soreness and occasional clouded vision as a result of the glaucoma drops. I have to have regular eye tests to continue to be able to drive. In other words, my independence is under threat. It is ironic that my current discomfort may be the result of addressing the side effects of the cancer drug. Especially so since I was assured after the operation to remove what was a very small grade 1 cancer that I no longer had any cancer and that the drug was just to prevent the possibility of it recurring.
I have stopped taking Letrozole but I think I may have suffered permanent damage - not only to the eyes (which may be coincidental) but also to my bones, as the CT scans show I have the beginnings of osteoporosis. Yet there was no discussion of the side effects of this drug - it was just prescribed routinely.
These posts show that there are many reported side effects and many women who are having to endure them.
Hi, was on the Accord brand of Letrozole for 6 months. The first two months, I was fine and suddenly I couldn't walk and the pain in hips and back unbearable. My doctor and oncologist kindly switched me to Femera, the original brand, and the difference was unbelieve. I am back to walking the moors again and no pain in hips and back.
Not all plain sailing though - I am suffering terribly with vision problems, migraine and low mood.
I hope you feel lots better soon. it seems a long journey and not what we all expected. Take Care. xx
Just letting you know that youre not the only one ,extreme side effects on my part ,was told to continnue ,and changed medication 3 times, some ,it seems have no problems, i have had many if not all bad or disastrous side effects. Not living anymore, stopped two weeks ago and now i can get out of bed...well see how it goes...
know that its a difficult choice to go against docs recomendation but iv stopped crying and can now walk 20 min which i was not capable of doing since LETROZOLE .
SO living with the thought of getting cancer again but also getting out of bed
What can i do but try to stay positive
Just letting you know that Iv been told Im overreacting to how Im feeling on these hormonal drugs! Took Tamoxiphene had to stop i couldnt lift a box of kleenex after 7months . Changed to Letrozole and pain was awful ,eyes went bad, abdominal cramps, bad headaches ,Depression ,panic atacks ,and much more...
Doc told me to change to Teva exemestane.. something , went into a humain zombie could not get out of bed after 30 pills, looking at walls ang not getting up ,not able to talk, wanting to go to bed when I wake up ! Im an old teacher!!! . Ive been told BC would come back if Idont take the drugs.
I understand ,but dying with a pill... chimo and masectomy and radiation were much eazier. Love my job but cant even do 25 min of activities like walking and talking.so stopped taking pills 2 weeks ago, Ican now lift a kleenex box and no longer take two hands to lift a coffee mug. Must be getting better. Have a wonderful partner who helps ,he didnt and still doesnt know how to help, he doesnt want to loose me but see how difficult it is for me. I do want to live ,somehow those medications are killing me. Still Im stopping the drugs.
Hope to have helped a few readers in showing that youre not alone in having IMPORTANT SIDE EFFECTS
Ladies I was stage 3 BC and was given Letrozole for 5 years initially! During this time the brand has changed at least 5 times all coming with their own side effects!
Flu like pains, hair and lashes thinning and brittle nails!
At my Onc appointment in February I grumbled about the side effects and he said I could take a break to see if it made any difference. I had been taking it for 3 and a half years.
I have been off it since and don’t intend going back on it unless it’s a matter of life or death! He said there wasn’t much medical evidence to prove that staying on it for over 5 years was beneficial.
After a month I realised the flu like symptoms had gone and my nails are now much stronger. I still seem to have thinning hair!😮
Hi Flora B. I had lumpectomy Fec/T, and 15 days if radiotherapy. Followed by 15 herceptin injections.
I was to I I’ll have to be on hormone therapy for 10 years. I am afraid I can’t do lol that time on these pills. I am 65 years old, I think the bone pain I could handle nd the tiredness. But wanting to kill yourself was such a frightening experience for me. I am the 4 one in my family to get breast cancer. I am not carrying the gene.
My mind is defo not the same I am so forgetful and that’s not me. Plus my eyes re bad now. Got cataracts in both eyes.
Myminds in. Spin.
Sorry to read about your experiences with Letrozole. They have much in common with my own, but are much more extreme. Like you, I had a stage 1 cancer and had radiotherapy. Both the surgery and the radiotherapy were well explained, but the Letrozole was not. I was quite surprised to learn I would have to take it for 5 years. In fact I gave up after 3. I see that you took it for much longer. When I visited the cancer clinics at 6 month intervals I was routinely asked how I got on with the Letrozole and for most of the time I was able to say I thought I was getting on OK. But there are two points here which were not made clear to either of us - firstly that the side effects are similar to menopause side effects which we could well be experiencing anyway, and secondly, that the effects take a LONG time to build up - years, rather than months.
It was only when I had evidence of damage to my eyes that I decided to question the value of Letrozole. The oncologist told me that having taken it for 3 years it had probably built up sufficient protection for me. So, this begs the question as the how long it should be prescribed. I thought the standard period was 5 years. You seemed to be taking it for much longer. Now I have given up the hormone treatment I have been discharged by the Breast Clinic. Apart from the annual mammograms, they are not monitoring me so are not in a position to assess the effects of stopping the treatment. This is one reason why forums like this can be so useful.
The questions we now want answered are whether we have suffered any irreversible damage from using this hormone therapy. I know that my eyes are permanently damaged, but cannot be completely sure that is because of the Letrozole. I suspect that, in addition, my bones are worse, but the oncologists I have seen do not seem to be sure. My GP suggests that the bones can be partly built up again by the continued use of Alendronic Acid.
Do you know whether you have suffered any permanent physical damage? As for mental damage, I do not think terms like "Brain Fog" are much use. It is hardly scientific and is quite perjorative. I felt it was much easier to come to terms with having a small breast cancer than it was to cope with a wide range of possible side effects, some of which could be longer lasting and more damaging to my wellbeing and independence.
I wish you well, and hope you will continue to recover from the side effects.
i can totally agree with what you have wrote on here. I felt like that after only 5 months. Benn off the letrozole now for 4 weeks and I must say I feel a lot better. But I have got to go back and see my oncologist next month so I surpose he will want me to take something different. But looking at the side effects they all seem to cause the same symptoms. I am at a loss as to what to do.
I was diagnosed with stage 1 Breast Cancer August 2009, had the op and readiotherapy, and was put on Letrozole Noveber 2009. I was prescribed Legtrozole and took it until March 2017. I was given no indication of the side efffects when put on the drug. Slowly the side effects started to build up and I went from an active woman horse riding,canoeing, walking ,photography,yoga, driving long distances, gardening, and Fund raiser , until in March 2017 I ended up wreck. Always been a competent driving I started to feel nerviouse with out any apparent reason. My eyes became very sensitive to light and, felt as if my eye bals were too big for the sockets. They became extremely drey and I had to give up wearing my contact lenses, which I had worn for at least 25 year. A vist to my GP was met with the advice that they would improve when the weather changed???. I was putting drops in about every hour and limited the amount of driving I could do. Then the panic attacks started and I found I was racing around a shop to get out and seek sanctuary in my car. I give up horse riding, when the horse tried to throw me and roll on me. I belived because my anxiety was being transferred to the horse. I loved walking in the hills until ond day I set out and my limbs felt so rigid I feared I would not get back to my car. When I ceased the drug on medical advice I spent two weeks on a sofa hardly able to walk because of the acute pain all over my body. I would burst in to tears for no reason. After 8 years the phrase Super Menopause and Brain Fog appeared in the medical conversation. I had twice asked my GP if I was starting with dementia, his reply was "I have alwasy beeen able to undersatand you. A none answer. I have been on a Mystery Tour, a Roller Coaster of Medical Knowledge that they didnt seem to want to share with me. Well 10 months down the line and having been sign posted to the Snowdrop Centre for Talking Therapy and neck and upper body massage, I am now feeling like a human being. I am nowhere the same person I was 8 years ago. OK so some will say that the diagnosis of cancer does that to you, but I believe that the drug has changed my personality it made me incapable of making rartional decisions and took me into a very dark place. But I am fighting back one day at a time, and making my life worth while, small steps. I had faced up to the diagnoseis of cancer and been positive because everything had been explaned very clearly to me , but regarding the drug Letrozole it was as if no one wanted to warn me of the side effects so I could be prepared and not suffer the frightening experence that it turned out to be.. I take termeric golden milk which has helped in healing my broken spirit and body. Wishing everone the peace and love to over come and complegte the jouney on Letrozole.