Hi, I'm just going to cut and paste here something I've just written in the Chemo Dec 2012 thread, as it relates to my experience of Letrozole, which I've just stopped taking after 5 years, in case it may be of interest to anybody.
"My treatment news is that I stopped taking Letrozole this summer, after 5 years, although the oncologist
recommended that I take it for another 2 years - a decision I hope I won't come to regret.
But the effect of Letrozole on my quality of life was so severe that i got to the point where I just couldn't bear to take it any longer. The physical side effects - aching joints, fatigue, generally feelinga hundred years
old - gradually dissipated by about year 3, but the mental side effects - which may be summed up in the useful phrase I saw somewhere 'Letrozole rage' - just got worse and worse.
For the last couple of years my mind was constantly filled with a cloud of anger just looking for something to land on, and it was horrible. And I was horrible. This led to a number of unfortunate incidents, and it got to the point where I just couldn'ttake being that person any more.
It was possible that these symptoms would have come on anyway with the menopause (which began with my first chemo session, after which my periods vanished for ever), but since I stopped taking Letrozole
in the summer, the constant seething rage has gone, which is a huge relief both for me and my poor husband, who bears independent witnessto the fact that I am 'much less explosive'.
I am writing about all this in case there's anyone else out there who is enduring similar problems. I know Letrozole is an excellent cancer drug, but it really is nasty stuff. I might also add that I have lost 1st 4lbs since I stopped taking it. i have been going to the gym regularly and eating a very healthy diet for the whole of the last year, but I only really started to lose weight since i stopped taking the Letrozole in June, and the difference is now striking.
I did spend some time studying the medical literature before i stopped taking it, as losing your safety blanket is a very big step. The consensus seems to be that in women with early stage cancers, the protective effect of taking Letrozole for the final 2 years is very small, and one that may well be outweighed by the problems caused by side effects. I still worry, obviously, but this did bring some comfort.
And now I feel like me again..."
Hi Christine! Merry Christmas to you! Yes, I do relate to the low mood and grumpiness-hugely. I can't speak about the Herceptin and Zoladex but re-the Letrozole...for me, it's been worse than what I experienced during my menopause. I am two years post menopause and don't recall feeling this tearful and grumpy with the world. Two weeks may be too soon to feel many of the effects of Letrozole, so I'm inclined to think some of the SE you describe are down to your other meds but I may be wrong. I'm about 11 weeks into Letrozole. I've heard tumeric is very good at stopping cancer from growing and though I'm not taking tablets, I sprinkle it (as a spice) on some of my dishes. My attitude is this: if the Letrozole does the trick I can put up with the mood change...only time will tell. I'm doing everything I can to avoid surgery. I'm 51. Invasive Ductal with Lobular features, Grade 2.
I hope your symptoms ease and hopefully others will share their experiences over the coming days...
I am 54 and started Letrozole two weeks ago. I am also on Herceptin and Zoladex. I was expecting the hot flushes but so far they have not appeared but the main problem i have is feeling very low and grumpy and a lack of appetite. It feels like a pmt mood but it doesn't go away. Has anyone else had this problem and if so does it go away afer a time?
I did speak to a nutritionist before i started and she has given me a diet plan to reduce acid reflux and stomache problems. I was doing ok until i had two slices of bread and the wind and tummy pains with indigestion were mad. Not sure if I have an intolerance or it is the Letrozole.
The muscle and joint pains i have with Herceptin seemed to stay constant but i do have some days where my legs seize up. The nutritionist has suggested turmeric capsules which i think are helping. Shoulders, hands and legs are not great and that doesn't help with the low moods either.
Hoping the side effects ease and the mood lifts over Christmas.
Sorry to hear you are struggling with the heat flashes and night sweats. When we had the heatwave in the Summer I slept with an icepack (wrapped in a facecloth/tea towel)-you could try sleeping with an icepack-I used in several ways: either resting it between my legs (just above my knees)-my leg muscles held it in place, *or* on my tummy (if you lie in your back. Just having it beside you, knowing you can reach over and grab it when you have a "flash" may help. I am not suffering much with hot flashes at the moment but this did help me in the Summer. Other options are installing a ceiling fan (I have one) or even having a stand-up fan in the room (I use an air purifier) also helps to keep the toom temp lower.
I hope you start to get some relief at night soon. Poor sleep is awful and we all suffer from it for a # of reasons.
For the day-time flashes, have you tried carrying round with you a hand held battery operated fan?
Sending you lots of cooling thoughts....
I have been on Femara for 3 weeks now and I have a real problem with heat flashes, and especially night sweats. I am 65 years and had moderate symptoms of menopause but now I can heardly manage the night sweats which last a good 30 minutes. I have dozens of heat flashes during the day. They announce themselves with a whiff of nausea. I tried cutting out sugar, and am taking Oxygen mineral supplement. Still thinking of acupuncture or reflexology. Bone pain is not a problem. The eyes may be getting weaker. I had an eye test recently before starting Femara - but there was no problem. Has anyone got similar experiences and share experiences how to get to grips with the temperature fluctuations? I am clothing in layers and constantly keep putting on clothes when shivering after a heat flash, just to take off again soon after that.
Gailey-you are fortunate to have an open minded oncologist. Mine is adamant there is no difference and calls this "nocebo"-where patient expectations (that different brands cause different SE's) contribute to negative patient experiences (kind of like self-fulfillikng prophecy). She is adamant, as is my chemist/pharmacist, that all brands share the same active ingredients therefore cannot possibly cause different SE's.
I am not sure what I think. I can see it from both sides. Personally, I've had two different brands so far (I'm 6-8 weeks in) but haven't noticed any significant difference between the two.
There are many generic brands of Letrozole as well as the original Femara which is more expensive than the generic versions. So most GPS will give you the generic version which may vary each time depending what brand comes from the supplier.
Last year I worked my way through all brands trying to determine what side effects I got with each but logically each brand you need to try for at least 3 months to determine if the side effects settle. I had joint pains and muscl aches on all some better than others and the best was Femara which I have been on now for nearly a year. In order for my GP to prescribe Femara she had to get approval from the Local Medicine <anagement committee (due to expense) she was only happy to do that as I had done so much research and trial and error with all the brands. One brand caused such joint pain after only a week of taking it so I crawled upstairs. I even paid for a private prescription for Femara to prove to myself there was a difference.
All I can say is stick with the Letrozole and document the brands you try and the side effects and then have a discussion with your GP. My Oncoloigist also advised that what I did was appropriate and agreed that side effects varied with the brand.
Good luck, persevere as we could all be on this for 10years!1
Replying to Jo. Hi, I have just registered with this Forum and saw your post regarding gastric problems with Letrozole. I started on it after Lumpectomy on 10th August this year and was given the Cipla brand which I settled down to with no side effects. However when I picked up my last prescription on 3rd December I discovered it was Accord brand. The Pharmacist would not change them so I have been taking them since resulting in constipation, extremely bad painful wind and ache along the lower abdomen as well as night sweats . I have today requested that my GP stipulates on my prescription that I require Cipla. I shall report back when I eventually get them and hopefully get rid of these side effects. I would be interested to hear what anyone else thinks about the various different brands of Letrozole. Fran
I too have had a lot of gastric problems since taking letrozole: stomach cramps, acid reflux, indigestion. After three months I have decided to come off them for a couple of weeks and meanwhile make an appointment to see my oncologist. I’m hoping he might suggest a different drug. I can cope with joint pain but have found the gastric issues quite debilitating as I don’t enjoy meals anymore. Hope you seek some advice too and get some help.
Thank for your reply and help.
I am not taking any more until I see my breast nurse 20 Nov. I didnt take any last night and already my legs are working better. I am not the kind of person to moan or ask for help so its hard for me to talk about it.
Thanks for your reply and help
I suppose we all react differently to medication and I must be one of the unlucky ones.
I didnt take any Letrozole last night and my legs seem to work better already. Am unsure what to do. I hv appointment 20 Nov with breast nurse am not going to take any till I have spoke to her.
Thank you for your help. I didnt take any Letrozole last night and already my legs are working a little better. Have got an appointment 20 Nov with breast nurse so I will leave it till then to decide what to do. I dont like moaning and am not used to asking for help so its hard for me to ask anyone.
I still cant leave the house at the moment so my dog will just have to get used to it for a while.
Dear MS55, what a horrible shock you have had.
I agree with what Optimissy and Marla have said, that you need to see your doctor. It is a little too early to hold Letrozole responsible.
The full effects of Aromatase Inhibitors can take several weeks or months to kick in, as their aim is to deplete the body of oestrogen. Post-menopausally, oestrogen levels fall but we continue to produce it in our fat cells, and this has importance for various aspects of our functioning. The AIs and also Tamoxifen are designed to deplete our systems of oestrogen to reduce the risk of recurrence of cancer, but it takes weeks for this to be accomplished, and certainly more than a week. Some women have greater (and quite profound) problems associated with oestrogen depletion than others, but it can take a couple of months for these to appear.
Your experience must have been a terrible blow. Is there someone who could accompany you on walks with your dog, to help you regain your confidence? Or could you take your dog on a different route for a bit, where there are more people around should you need help? Just having help at hand could give you some assurance.
Very best wishes
MS55, I am so sorry to hear about your fall, but couldn't agree more with Optimissy and before reading her reply was going to suggest the very same thing: your fall may be unrelated to the Letrozole. Whenever we start a new medication (whatever the medication is) it is too easy to conclude that any symptoms/side effects are related to the medication. It may just be coincidence that your legs gave in (as unpleasant and scary as that was for you).
I've been on Letrozole for 5 weeks, and though I do get achy knees at times, I *can* still walk, though admittedly I don't own a dog and haven't gone on my 17K walk in Greece (one I love to do whenever I go to Greece). That will be the true test for me!
But back to you...I agree with Optimissy...see your doctor for a check-up and just make sure there are no other explanations for your fall or your knees giving way-sometimes these things happen to us for no reason at all and I do think that a one-off can be "inconclusive". If this were to happen to you each day or each time you took the dog out, I'd be more concerned, but as it was just the once (thank goodness) it may just have been a missed step, or a bit of a balance issue or something else very innocuous (nothing to worry about).
I feel for you but as someone who is taking Letrozole and who also worried about the "horrible" side effects that many women report, I am here to say that 5 weeks on and I feel fine, on the whole. So please don't conclude it's the Letrozole until you have more evidence. It's a powerful drug that can help us post menopausal women and according to my consultant at a very large teaching hospital in London-Letrozole (of all the hormone therapies) has the best evidence base and over and above the others.
Sending lots of love and positive thoughts to you...xxxx
ms55 that must have been horrible for you and very scary to fall down.
Please see your gp or talk to your bc nurse, as there may be other reasons unconnected with the medication why this happened - it seems really early on in your treatment for it to be the Letrozole - I would think it would take longer than a week for it to be settling into your system. But if it is the Letrozole, then there are other brands you can try, or other oestrogen inhibitors or, though you are post-menopausal, Tamoxifen may be prescribed which works differently but still protects against cancer recurrance. But if it were me I'd be inclined first to get myself checked over to rule out any other cause for a collapse like you describe. I do hope things improve. X
I hae been taking Letrozole for a week, I cant walk or function. My legs gave way whilst out with my dog and I couldnt get up. I just sat there crying till a kind person helped me up. I was so embarrassed. I seem to have most of the side effects listed. I phoned doc and they said try to persevere.
I think I will give it one more week and then just do without it. I dont care if the cancer comes back. I enjoy walking and other outdoor sports and now I cant walk. My poor dog is stressed out because she is used to long walks in the woods. What is not what if.
Good luck to all the ladies taking this horrible medication
So sorry you are worried about your weight; I do hope you get some good advice from Weightwatchers.
Artificial sweeteners are not any better for us than sugar and can prompt their own problems, so it is down to you which you prefer.
To reduce weight, we need to reduce our intake of fattening foods, but that doesn't mean removing them from our diets altogether, just getting the right balance for us. Here is a link to some helpful information on the Breast Cancer Care site for Healthy Eating.
They stress that reduction in the quantity we eat will lead to weight reduction, so reducing the amount of sugar you have in tea and coffee, rather than cutting it out altogether, would help. You might also find it helpful to list for a week or so what you eat everyday. That would give you some pointers to where to start with reduction of fattening foods and increase of fibre.
How much exercise do you take each week? Increasing that, initially very modestly, can also help.
Best of luck.
I have just joined Weightwatchers as I have put quite a bit on since my diagnosis due to too much eating, being at home and not working.
I am a bit confused as I have always used Sucralose in teas, coffees and cereals but since breast cancer was put off as its not a natural product but have just read on the NHS website that its harmless and does not cause cancer.
since my diagnosis I have started using sugar but I want to lose weight so dont like to use sugar and yes I have tried not using any sugar or sweetener but just cant drink coffee or tea without it.
Just wanted to find out what others think or know about this topic
Hi sorry I took long to reply. I'm glad the calcium and Vit D tabs are helping you I will get some today