It's great to hear you are doing well and yes, it seems to always be a waiting game of one kind of another. Good luck on 8th May...here's hoping you get to have your tissue expander exchanged with a permanent silicone implant soon and I have no doubt it *will* be before Brexit. That, I'd be willing to make a £££ bet on.
Sending lots of love...and hope you have a lovely Easter.
I haven't posted for some time so it was good to hear from you. My bone scan was reinstated
but the hospital phoned the day before to say it was cancelled as they reviewed my CT scan and
decided it showed multiple bony mets in my hip so no need for it. I saw my surgeon in November and he thought the Letrozole was "working" as I showed no symptoms of mets.
I had my 12 month mammogram last Tuesday and am hoping to become a neddy in the paddock as I still feel ok. Due to see Oncologist in May.
I believe that osteo-arthritis can be mistaken for cancer and wonder if any of the ladies have come across this before.
Maybe I will get that bone scan after all, so your messaage has been very supportive.
I hope you are doing well also.and your scan was ok.
Hi Mumbakes - thanks for this - I'm glad someone else has had this particular brand and been OK with it. fingers crossed I will be OK as well.🤞
Hi Marla - great to hear from you. I'm doing quite well. Still waiting on a date to have the tissue expander exchanged with a permanent silicone implant. No date yet - it was supposed to be this month - but like brexit it's been delayed.🤣
I have a date for a pre-op assessment on 8th May so that I'm 'ready to go' when a slot on the surgeons list becomes available. It's another waiting game - that's all I seem to have been doing since last July - waiting on various tests or procedures. Keep in touch.
I have been taking Letrozole for 3 1/2 months now. The first box from the hospital were Accord. I had back ache for a week or so but then my body adjusted. But then the next lot from my chemist were also Sun-Pharma. Like you I was really nervous about all the side effects and seems like a lot of ladies on here have really suffered with differing brands. But all I can say is, for me, Sun Pharma have been absolutely fine. I’m having some menopausal symptoms to be expected as am also having Zolodex injections, so the oestrogen removal/blocking is coming at me both ways! So, some vaginal dryness, hot flushes but all in all I seem to have avoided some of the horrendous side effects that others have to put up with.
Having said this, I have just registered with Pharmacy2you so don’t know what I will get next month......fingers crossed.
Good luck xx
I’m out and about so this will be brief but just to say I wouldn’t worry too much about brand changes. I’ve not heard of sun pharma but have been on at least one other brand other than Accord and really no difference.
I hope ur well otherwise?
Hi Marla - really glad to hear the Letrozole is working to shrink the cancer.👍
I've just popped on here because I've only ever been prescribed the accord brand of Letrozole and I seemed to be doing OK with it, just fot my latest repeat prescription and i've been given a brand called 'Sun pharma' - I've never heard of this and I'm really worried its going to mess me up.😪
Has anyone else ever heard of this brand?
I'm so pleased to hear that you are cancer-free. That's wonderful news. I hear you loud and clear re-the effects of radiotherapy. For me, it's mor about *choice*. I may well choose mastectomy in the end but I want to do so a) knowing I did all I could to shrink the cancer and b) that it was *my* choice rather than being told by a doctor. I didn't realise how powerful Letrozole was until hearing from a woman on the MacMillan forum who's cancer shrunk by 50% from Letrozole.
I'm "Miss Optimistic" at the moment....only time will tell.
I hope your sweats get better. I'm bracing myself for another hot Summer and sleeping with icepacks...it's my norm...I'm always warm in bed and I don't tolerate the Summers particularly well.
Dear Maria 13
I appreciate your replies.
Pleased to hear that Letrozole is effective in shrinking your tumor.
I had a double mastectomy and I am completely cancer free. I was prescribed the hormones as adjuvant treatment.
I just cannot face the the toxic effect of chemo or the irradiation on the tissue from radiotherapy.
I am now more than 4 months on the drug and I am still hopeful that the sweating goes away .... the healthy lifestyle is a big plus to quality of life.
Keep checking this site ... the feedback is really helpful.
I'm quite confident that the women who are getting on nicely with the drug are not posting on here so it's not necessarily the case that "most of them are coping is rather overly optimistic". I've been on it nearly 6 months and am coping very well hence why I've not been checking messages or remembering to check this thread very often.
I also think that all of our "pre-cancer" physical state will determine how well we cope with the drug. I've always been relatively fit, no joint issues, and so whatever joint issues I did have at the beginning, have subsided. I'm also not experiencing hot flashes, etc. I don't know-I think for many women the drug is not a problem. It's a bit scaremongering to say "a high proportion of those....gritted teeth"-when the truth is that this drug is more important than surgery (so I've been advised by my own surgeon). This drug shrinks the cancer and gives some of us the choice between mastectomy and lumpectomy.
I would encourage any woman thinking of starting Letrozole, or who have already started-to listen to *their* own bodies rather than somebody else's.
I'm so pleased to hear you are feeling a little more hopeful. I think the side effects really vary from person to person. I had achy joints at the very start but no longer; I've been on Letrozole now nearly 6 months. My MRI's show that it has shrunk my cancer so as far as I am concerned *any* side effects are worth it!
I hope you continue to feel hopeful-I'm happy to stay on the drug as long as permitted.
I think that "most of them are coping" is rather over optimistic, I'm afraid. The percentage of women not finishing the recommended treatment is very high and, from much of what I read a high proportion of those who are still on it are hanging on with gritted teeth, which isn't what I'd describe as coping.
Hi Maria 13
I see that you also benefit from a healthy diet and exercise.
I cannot agree more!
The side-effects have not gone away yet - but I am hopeful.
When I see that a lot of women are on this medication and it seems that most of them are coping then I am also trying to do the same.
I decided that 2 years on Letrozole is the maximum period ... so I am working towards cut-off date.
Dear Maria 13
Thank you for your suggestion. A fan in my living space was a life saver when we had the summer heat (on this side of the globe).
After more than 4 months I am managing the sweating a bit better.
The doctor prescribed anti-depressants to control the sweating - which was a real problem. I got insomnia and had to take sleeping pills and got into a bad mental state.
I quit this route very fast - instead I have learnt to stay away from sugar and red meat. Being invited to a barbeque and eating steak and sausages has a very negative and long-lasting side-effect. So I am on a very healthy diet of whole grains, vegetables and salads, fish and chicken as well as dairy. I am not putting on weight - on the contrary I lost 2 kg.
I do have a back pain - which was also reported by some of the others. But it is bearable. I have to control my stress levels - I have a demanding job and I cannot leave my responsibilities behind (should be retiring). So I do a bit of Yoga and keep myself positive and excited with my life. It is a problem when I have to shed the layers while in a meeting, where there are stressful discussions are going on.
I found sesame seeds are good.
I have to try Magnesium and Calcium.
I will definitely only do 2 years of this medication and I cannot wait for this period to pass.
Hi lady sufferers, it's not the active ingredient as such that causes the side effects, but the fillers and coating for the product. At my second meeting with my Onco and lead Secondary Breast Cancer nurse I was told very firmly to try different brands until I found one that suited. My brand of choice is Teva, and I can cope with Accord. Cipla is a big fat no no as the joint pain is crippling, and Dr. Reddy makes me slightly nauseous. Letrozole, I ve been told, does tend to pile on the weight around the middle, so trying to eat sensibly I think would be helpful. Also, if the Letrozole is blocking the oestrogen which feeds that particular cancer, why would you willingly take in more oestrogen? Doesn't make sense to me to make my poor old body work even harder! X
I was on letrazole for 9 months. During that time some days I had to use crutches to get about. I was in agony with my right knee. I could not put any weight on my leg. Additionally my eyes were all swollen and bloodshot and seemed full of grit. The breast nurse told me to stop taking letrazole to see if there was any improvement and there was within days. I now take exemestane and apart from a bit of stiffness in my joints my aches and pains are tolerable. However my eyes are sore again but not as bad as with letrazole. It might be advisable to ask for a change. Hoping things work out for you.
Hi Tinkabell! I have the bone scans every 6 months... I go for the injection and then I leave. No preparations, no restrictions. I return in 3 hours for the scan. The scan itself takes about 30 minutes.... sometimes the radiologist will want another view from a different angle, etc. so the time I am there could be an hour, but not constant scanning. Sometimes just waiting to be sure they have everything they need. I don’t find this uncomfortable or anything, and really a small amount of time to give us peace of mind. Hope this helps. Wishing you all the best.
Only been taking letrozole for 2 months but i do have urination problems now that i never had before. I was checked for an infection but that came back clear. The incologist said that lack of estrogen affects the pelvic floor. She suggested cistisis sachets to desensitise the bladder but i havent done that yet.
I have also had a few back pains that are new. My last Herceptin is due tomorrow so after that i will know what side effects related to that.
I was also advised by a nutritionist to take turmeric supplements for the aches which has definitely dulled the aches. I take a vitamin D supplement too.
I’ve been on Letrozole for 13 months, and apart from the hot flushes ( which are less now I’m wearing a Lady Care magnet) haven’t been too bad. Has anyone else developed frequent urination and how far through treatment when it started? My GP doesn’t think it is the Letrozole due to the amount of time I’ve been taking them and all the tests she requested have come back negative thank goodness.
I have been on letrozole for 30 months now. I was on Arimidex for 10 months prior to that. In another 20 months I will be done with my five years and I can’t freaking wait! I have had severe reflux and digestive issues from day one. Switching from Arimidex to letrozole didn’t help. I have managed the reflux and digestive issues by changing my diet and seriously watching what I eat. When I can’t take the pain in my throat anymore I take a Pepcid AC which does help some. I suffer From arthralgia also which is a side effect of aromatase inhibitor’s. This coupled with the insomnia, frequent urination and sadness makes life extremely difficult. As I have made it this far, with just over 1 1/2 years to go, I’m going to hang in there. But there is no way in hell anyone will convince me to take it for any length of time after my five years is up! I’ll take my chances !!!!!!
I'm fairly new at this. Had a needle biopsy in October. Stage 1 so surgery postposed until i lose some weight. Started Letrozole in November with some hot flashes but have now developed upper back pains, breathlessness along with some dizziness. Oncologist office said discontinue Letrozole for 2 weeks then go back on it. This is to verify that it is the meds and not something else. Good luck.
Hi, having read your post, I have been contemplating giving up on Letrozole. I had a Lumpectomy in July 2018 and started Letrozole straight after continuing through 3 weeks' Radiotherapy. At first the side effects weren't too bad but now after 5 months or so I'm getting fatigue, breathlessness and really bad ache and pain across my upper back . It seemslike the bones in my rib cage are aching, especially when walking. Up to now my joints are ok (hopefully will continue to be). Did you experience aching in upper back? I'd just like to know if these are symptoms of side effects before deciding what to do. Hoping you are feeling much better now. My cancer was Stage 1 Primary with no lymph nodes involved.
I agree with you Sunflower, that Letrozole reduces the production of Estrogen but if one (who needs to lose weight, i.e., me) can help the Letrozole along by losing weight...why not? Exercise can also help with some of the side effects. My motto is: move, move move.
Fat cells do indeed produce estrogen but that is what your Letrozole is there for to stop them doing that so you dont have to worry about weight its just about getting through all the side effects of the letrozole.
I couldn't agree more. I've put myself on a strict diet (I know-the four-letter word that nobody believes in anymore)-but you know what-it works. I've been eating a huge salad for dinner...lettuce, cucumber, carrots, celery, linseeds, flaked almonds, sunflower seeds, beetroot (I love them)! and 4-5 anchovies (I need a bit of salt). For breakfast I eat a small bowl of "no sugar" Alpro (I'm dairy-free) with all the seeds above sprinkled on, as well as blueberries, or on a carb day I have 2 slices of toasted rye bread with smashed avocado.
I can go without lunch (whilst off work) and have nuts as a snack in the afternoon.
I have been doing this for about a week now and already feel "lighter"-I live alone and used to eat so much-I *love* carbs, but they weigh me down. I'm 5'2, and was weighing between 135-140 pounds (63.5 KG).
I have also been running (I used to run and stopped due to laziness)-I ran over 2 miles on two days this week and again, feel so much better for it.
Exercise and diet are key.
And yes, I have the aches and pains that others have, but I also believe that our pre-Letrozole state determines how well we cope on it. My joints and muscles were pretty healthy before Letrozole so I imagine that my aches and pains are on a lower end of the severity scale compared to some other women.
The trouble with putting on weight is that fat cells produce more oestrogen as do carbohydrates, whereas eatign most vegetable has a positive effect. I'm glad it works for you but it all sounds contradictory to me, I'm afraid.
I have just been reading this thread as I too am on Letrozole ( have been for about 9 months now ) and have all the usual side effects, stiff joints, depression, head aches etc but they are not too bad I can live with them but a few months ago I had terrible "gastric" problems and I decided to go back to basics and take them as it says on the packet, i.e. with a large glass of water, I also have a large cup of tea and some plain biscuits after taking them and have a large meal before I take them, I make sure the meal I have before them is very starchy/high in carbs, usually lots of boiled potatoes, with just a very small amount of veg and it seems to have stopped the "gastric" problems, I used to eat a lot of veg but it just does not seem to agree with Letrozole so I may end up putting on a bit of weight but if it makes me comfortable for the next five years its a small price to pay.
Any of you that are having gastric problemst may find it worth trying this kind of change in diet before you give up taking them all together and I also think drinking plenty of liquids around the time I take them helps.
I, too, have heard Magnesium is good for BC patients but I'm just wondering (though I'll also ask my GP)-as far as you are aware...are there any contra-indications, i.e., high blood presssure, cholesterol, or other health problems that could be made worse by taking Magnesium?
I have mentioned this so many times and had people thanking me! Just take MAGNESIUM!!! It's amazing. Google it!..I almost stopped taking Letrozole, my whole body ached, I felt like a 90yr old!..it's a muscle relaxant and gives you energy etc! You will thank me, what have you got to lose? I buy Lamberts (who supply to NHS) take one on a morning and one an hour before I go to bed...and remember MOST of us are deficient in this wonderful supplement! I now get mine on prescription (also take your Calcium D3!)
Thank you Cybele, that's very helpful.
What you say supports my experience of Anastrozole, which is of course a sister drug to Letrozole. I was on the latter for only about 3 weeks as I developed a rash which my clinical oncologist identified as being caused by the drug. I was then on Anastrozole for 9 1/2 weeks, by which time I had symptoms including extreme irritability (over nothing), extreme fatigue, muscle and joint pain, extreme depression, complete loss of motivation, nausea and loss of appetite. I was advised to stop taking it and although offered Exemestane, I declined as the medical literature indicates that the adverse effects of Exemestane, very similar to those of Letrozole and Anastrozole, are attributable to oestrogen depletion. After all, the AIs are designed to render our bodies free of oestrogen.
The irritability was extremely horrible. I would wake feeling really bad tempered, and would keep looking for something to be bad tempered about. It meant exerting extra cognitive control the whole time and it just wasn't feasible.
Tamoxifen, although operating by a different mechanism to the AIs, does not appear to be at all preferable. I've posted details about the pharmacology of Tamoxifen in other threads. (It blocks oestrogen receptor beta which can have a resounding effect on many of our functons, including cognition. It mildly increases oestrogen receptor alpha, but that can prompt uterine bleading and other nasties.)
Individuals differ, but it looks as though some of us might be particularly sensitive to reduction in oestrogen, so as these drugs are designed to wipe it out altogether by one method or another, we are between a rock and a hard place.
Thank you Marla and Cybele. I know everyone is different but it is good to know i am not alone in this. Luckily I do have people around me who understand what i have been through and hopefully will bare with me over the coming months/years.
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.