To add to my last post: I should say that the services offered by MacMillan nurses and this Cancer Care Forum are complementary. They are BOTH useful but in different ways. Your proposed method of taking the tablets is quite unusual and perhaps requires an answer from someone closer to your particular circumstances.
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Tinkabell I understand the difficulties you have in getting answers to your queries. When I was first registered at my local Breast Cancer clinic I was assigned to a MacMillan nurse and given her contact details. I called her once or twice by phone with "minor" queries. She couldn't necessarily answer straight away but she was very useful in talking me through what was puzzling me. Do you have a similar service? It is SO useful being able to talk to a sympathetic and understanding person who is willing to go through answers with you.
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Hello Pippi 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.
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Hi Suemolly1 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.
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Dear Scotsrambler 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.
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Hello Pili Pala I believe that Letrozole has seriously affected my vision and caused glaucoma in both eyes. I had an eye test 6 months before diagnosis with a small stage 1 tumour. The eye test was normal for me. I had the tumour and some lymph nodes removed and a 15 day course of radiotherapy. I was put on Letrozole immediately after the operation, and told I would take it for 5 years. It is difficult to sort out the side effects of a drug which has similar (but worse) effects to what we experience at this stage of life. I didn't feel exactly well but was glad the cancer had gone. After 2 years I thought I needed another eye test. There is very little literature about Letrozole and eyes. The patient leaflet only briefly mentions it. I was eventually diagnosed with glaucoma in both eyes, and loss of field of vision - this means I have to take additional vision tests in order to keep my driving licence. Neither the oncologist nor the opthalmologist thought there was any connection between this vision loss and the Letrozole. But I was upset enough about my eyes and I stopped the Letrozole. The opthalmologist tells me that glaucoma is very slow degenerative disease. Yet in my case significant damage happened relatively quickly. It is a year since I stopped the Letrozole, and as far as I can tell, the glaucoma is stabilised. The period of damage coincides with the period I was taking Letrozole. I suggest you get your vision tested as soon a possible, in particular your field of vision. My glaucoma didn't show up on the other tests. If there is damage, it is best to catch it soon. All the best.
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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 -
my cancer was picked up very early on by the regular breast screening programme when I would not have been able to detect it myself
screening associated with taking Letrozole showed I was osteoporitic and this is now being treated.
screening (i.e. regular NHS eye test) picked up my glaucoma, which I hope can be stabilised instead of getting worse.
I just hope that nothing else goes wrong!
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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! FloraB
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Hello. 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: Could this loss in my field of vision/possible glaucoma be attributable to Letrozole? It seems to have happened too quickly to be simply ageing If it can be attributable to Letrozole, is it possible to recover the damage? Is the Alendronic acid also likely to affect the vision? Waiting to see an eye specialist and the cancer team. Would be very interested to know if others have had a similar problem.
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