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LETROZOLE SIDE EFFECTS; PLEASE HELP

242 REPLIES 242
Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Take the Femara! It’s supposed to be excellent. It’s not just the drug that causes SEs, it’s the blooming additives . If your GP has prescribed it then you can have it. X

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Lady Baguette

I similar age to you 69 and similar journey

Just wondering how and which side effects the cbd helps and which brand and strength you take?

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi thanks for replying. I am so confused now. The oncologist phoned me and said I couldn't have the femera because it costs£90 a month but because I didn't tolerate the letrozole he would ask the doctor to prescribe tamoxifen. The pharmacist then phoned to say they can dispense the femera because the doctor has agreed it. Really not sure what to do now

I start my radiotherapy next week having waited for three months from surgery the doctor said to wait until I have finished radiotherapy to start the tablets but the oncologist said no to start them as soon as possible. 

It is very difficult to know what to do with so much conflicting advise. My breast cancer was early stage no spread to the lymph nodes and 16mm so stage one

It is however the second primary breast cancer having had dcis 20 years ago and had a mastectomy with reconstruction but it was in that side and this time it is lobular carcinoma grade 2  eastrogen receptive 8 so thinking I would be wise to take some form of hormone treatment

So difficult to make decisions with all the conflicting advise

 

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Jolow, what rubbish your pharmacy is talking. Your GP has okd it, and it’s coming out of their budget, so you can have it. Contact your GP immediately to report it, and change your pharmacist. Well done for getting the Femara okd. I’m on Teva brand and it’s fine for me, and Accord is too. The Cipla brand should be called the crippler brand as far as I’m concerned. Good luck. 🍀

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi I am also on letrozole I was given the sun brand the side effects were terrible. I spoke to my doctor who gave me a prescription stating the femera brand. The pharmacy called me to say they have been able to order it but are not allowed to dispense it because it is too expensive. I am very confused so at the moment I am not taking them.  It seems to me you have to have whatever is cheapest.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, I’ve been on Letrozole since March 2017. I was fine until I went back to my job as a night carer in a residential home. I am really struggling with flushes and knee pain and find it difficult to sleep even on my night off. I work 3 nights a week and I want to drop to 2, but I’m worried they may terminate my employment. 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Marvin and all Letrozole sufferers!

Your post about aching legs struck a chord with me. I have been on Letrozole since January, so 7 months now, and also have 4 weekly Zolodex injections to switch off the ovaries, so the oestrogen depletion is coming at me both ways, when I am bad I suffer with horrendous headaches where I’m convinced I’m going to be sick too, aching calves and ankles, very low mood, and often aching back. I also have the hot flushes but I try to ignore that because at 52 I’d be getting those anyway. However what I HAVE noticed by keeping a diary is that there is a cycle to this ( for me anyway) just like back in the pmt days! I have found that about 4-5 days before my next Zolodex injection I am at my worst. It’s so hard to stay positive on the bad days isn’t it? Like I know if my joints are stiff the best thing is to stretch them.......but when you feel so low getting the enthusiasm for a yoga session is no mean feat 😫 Has anyone else noticed a cycle where you get a few OK weeks? 

My brand is different this time and I don’t think suits me, it’s Accord. Up to now I’ve been on Sunpharma which on the OK weeks has suited me. Good luck ladies......I’m just going to tuck under my duvet again for a bit xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you for answering me. I’m sorry you are having pain too. Have you had any back pain. I’m new to these forums and don’t feel I can speak to anybody about it because I sound like a broken down moanx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Marvin,

Yes I am having heaviness and pains in my lower legs, with very painful knees and also swelling around the ankles into my feet. I wasn't sure whether these symptoms were related to the blood pressure medicine I have been taking....

I started taking letrozole in October 2018, but was told by BC consultant to stop after 2 weeks, until after my RT finished at the end of December. I started again straight away, but by April, I was a complete mess. I was crying all the time for no apparent reason, my joints were aching, and my blood pressure (which had been controlled before), was through the roof.

My BC told me to take a "letrozole holiday" for 6 weeks while my GP sorted my BP. My symptoms immediately disappeared, and my BP started to reduce with the new medication to control it. Starting the letrozole again was ok to begin with, but after 4 weeks the joint pains were back, worse than ever, my feet and ankles are so swollen that by the afternoon I have problems with shoes, and I am kept awake at night with the lower leg and joint pains.

It does seem better if I am out and about and very active, but tiredness makes that impossible to do every day, unless I want to be in bed by 8.30pm!

Most weeks I try to swim once and do Tai Chi (this at the local Maggie's centre), and on those days I do feel a bit better for a while.

I don't know whether the swelling of the ankles/feet and shin pain is related to the letrozole or the amlodipine I now take for blood pressure, but whichever it is, it really is affecting my mood.

I often feel as though I'm ancient rather than (a previously fit) 60, but having read about the other options, I think letrozole is possibly the best option for now.

I hope your legs improve.x

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi I am new to forum. Yes have been on letrozole for nearly three years. My symptoms are really annoying. I have headaches, bone and muscle pain. My lower back is painful at times. My legs feel really sore and heavy,and my feet and lower legs are burning and tingling. My hands have also started burning. The heat in my body makes it ache a lot. I am afraid to stop taking it because I had a lump and lymph nodes removed which 7were affected but 12were clear. Does anyone have any of these symptoms especially the pains and heaviness in the legs. I would be grateful to know. I feel sorry for,anyone going through these effects. I feel I have aged with it.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Teya

I've been on letrozole (accord brand) since end of Jan this year (almost six months) to shrink two tumours so I can have a lumpectomy instead of a mastectomy. I haven't had any side effects which is a big relief. (Surgery this month).

My GP sorted out a DEXA scan for bone density for me as the consultant  wasn't in a rush to do it. The scan showed a mild osteoporosis which would have been there before I started the letrozole. I was a bit upset as I wasn't as healthy as I thought (breast cancer aside). So now am on drug for that plus vitamin d/calcium tablets, as the letrozole can make you lose bone density after about a year I think.

Hope you are doing okay with the letrozole.

 

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Ali, very sorry to hear you are in pain and struggling. I’ve been on Letrozole now for two years and I’m doing ok. I have changed brands until I got one with fewer side effects. I have had to be pro active in combatting side effects, and I’m really glad I’m retired and can just listen to my body . I do rest when fatigue hits, and I’ve had a little holiday from my meds when my joints were really bad, but that was at the beginning. I do TaiChi every week, which exercises every joint, and also includes meditation which helps with sleep patterns. I use Epsom salts in my bath to ease my joints, although I sometimes need hubby to haul me out! 😬. I swim three times a week....very very slowly.....but it has helped with hot flushes and my lymphodaema . Twice a week I try to do 30 minutes gym stuff....again very gently. I stay off sugars , including white wine, as that seems to spike my temp and increase joint pains. I’m also careful re foods with chemicals which can upset this rather delicate body I appear to have been left with. I rely on recipes from the Royal Marsden and Maggies as they give tons of info on what to eat, when and why. A good nights sleep always makes my day better. I do take my tablet at night so that side effects can be slept though.....sort of! I know what you mean about the joints on the side where the treatment was as I’m the same. The swimming and walking has helped , although at first I kept swimming into the side, and walking off the treadmill! Good job we can still laugh at stuff. I do hope that you are having a phased return to school.  As a retired teacher I know how energetic the job is, and you need to be on top form to in control of a class. I hope I haven’t overloaded you, but I would like to help you continue with your meds if you can. All the best. X

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hry all 

Sorry if this as been mentioned but has anyone had side effects with eating ie last night went for Thai couldn't taste noodles and just spice from the curry my taste buds vary day to day cause day before u had salmon could taste that

Xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Dear Teya

Stay positive.

The whole purpose of this forum is to work for people who are experiencing problems.  I am sure there are thousands of other people out there who are not having problems or who do not feel driven to seek support.

Stay positive but rest assured that this is a supportive forum for when you have doubts.

 Letrozole is a long term treatment. Keep going and keep aware. All the best. 

FloraB

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Oh dear!

 

Started on leprozol yesterday!

Not feeling optimistic having read everyone's comments but hoping for some good news 😄

 

Is is there anyone out there who has managed to take this without horrible side effects?

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi AnnieJ,

 

So sorry to hear you've got secondaries in your lungs, but really pleased for you that your side effects re-Letrozole are more manageable & you are now ready to swim and gymSmiley Happy. As you said, onwards and upwards...your outlook and attitude will do you the world of good! 

Sending lots of love....

xxx

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi ladies, I have secondaries in my lungs, so I’ll take the  Letrozole plus Palbociclib until it stops working. After trial and error with sweats and heat surges I now take my Letrozole at night before I go to bed. I can manage the menopausal type stuff better, rather than during the day. I also changed brands three times, and the Teva works great for me. A bit of a warm flush that is soon gone with my glass of water. I used to keep a small hand towel by the bed as the sweats were unbearable on the first prescription. I also bought a chill pillow which is magic. Some stiffness and joint pain, but all manageable especially as I am now fit enough to swim and gym. So much easier. I’m afraid it is two and a half years since I was first diagnosed and it hasn’t been an easy journey. Old age is an added factor as I’m 72. Onwards and upwards, ladies. Lots of success stories here. 🍀 x

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

thank you for your reply its good to know from people how are on it not just the reading material you get bombarded with

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Cookie,

 

I would echo what Christine said 100%. We are all different and what works for, or suits one woman may not work for or suit another. I am doing fine on Letrozole...no major side effects (the ones I have are tolerable) but other women feel dreadful on it. I didn't have the choice-I was post menopausal and my surgeon said the evidence for Letrozole's effectiveness is stronger than for Tamoxifen so I went with the evidence. It is working in that my cancer is shrinking (pre-surgery) and I'm very happySmiley Happy. It really is a personal choice and may be worth deciding on one, trialling it, and just seeing how you get on. I am presuming you can always change meds if the first one doesn't suit. 

 

Good luck with your decision but try not to worry about it too much....just gather enough information to help you make an informed decisionSmiley Happy.

xxx 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Cookie

I have had a double mastectomy with no cancer in the Lymph nodes and was pre menopause. I can't take Tamoxifen due to a reaction to another drug so I have to have zoladex as well as letrozole. I am not sure what my risks are but the oncologist insisted i take it.

 

The side effects vary on the person as you can probably see on here. My experience was that when I took tamoxifen 20 years ago the side effects for me were minimal but it didn't work for me as I had a second cancer less than 2 years later ER+ again. For me the Letrozole has more side effects. I have a lot of aches and pains which do make me think I will not do the full 5 years. I also have skin problems and bladder problems with constipation too.

 

Every one is different and you do not know in advance which side effects you will get. It may be you try one and see how it goes. If you have the option of either then you can always change.

 

xxx 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi 

I am new to all this,  I have just had a single  mastectomy  which has gone well, I have been advised to take either Latrozole  or Tamoxifen . I am 2% ER positive .  61 and post menopausal .

I have been told it is completely up to me.

Having read about both and there side effects I am both confused and very concerned with the pros and cons.

I have no further evidence of anything else there and no lymph nodes where effected.

I would love to hear from anyone who is either in the same quandary or taking either.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Margie,

I'm having to have a Masectomy as I have COPD respiratory condition. I'm taking g Letrozole while waiting - I didnt know I could go without Chemo ? And maybe just stay on the hormone therapy.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Dear Lady Baguaette

 

Thank you for sharing your experiences. For me the genuine Femara was giving me a backache, which promptly subsided as soon as I went onto the generic, called Laradex. Femara also made me sweat so much more than the generic Letrazole.  The only problem I have with the generic is nausea, followed by a massive sweat attack. That is getting less though.

I am 65 and also self-employed, running my company. As soon as there is a lot of stress like when I had to go on an overseas business trip, the symptoms were quite strong. When I can take it easy and I have a routine my body settles again. 

I was also on HRT for about 12 years and I had a great time. When I was diagnosed I immediately opted for a double mastectomy followed by the hormone therapy. I don't want to subject my body to the harmful radiotherapy or the toxicity of chemotherapy. I am now completely in remission and very happy about that. Hopefully I will not have to go through 5 years, but only 2 years or even less.

My son wants me to take the Cannabis oil, but I am not that way inclined. I am not a gym person, just keep active walking and doing things for myself and being independent.

I wish you all the very best for your business and for your treatment programme. 

Good luck.

Kind regards

Margie

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Margie,

 

I'm sorry to hear about your nausea. I'm not a doctor so can't say for certain if your nausea is a result of the change in brand, but I do hope you do get used to the new brand, and start to feel better, and if not, it may be worth asking your doctor/chemist if you can switch back to the Novartis brand just as an experiment-to see if the nausea dissipates. 

 

I'm really pleased to hear you are in complete remission-that's wonderful news!

xxx

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Marla

 

I have not been on this forum for a while.

I changed to the generic brand about 2 months ago - I was on the Novartis brand for 4 months.

There was quite an improvement in my overall condition - less sweating and no back pain!

However, I am getting nausea. I eat very selectively - wholewheat bread and cereals, no red meat at all, no sugar, no chocolate, a little chicken and fish. Potatoes, rice and pasta are ok, and most vegetables. Fruit with high sugar content needs to be avoided. As I eat small portions now I lost about 3 kg so far.  

I think changing the brand has been good. 

Hopefully the body will get used to the medication. 

I want to get off this hormone after 2 years.  I already had a bilateral mastectomy, and am fully in remission. Oncologist says the treat is only prophylactic.  Glad to hear that Letrozole is so effective in shrinking the tumor. So it should be Ok for me to stop with the therapy after 2 years or even sooner!

Best wishes for your treatment, when it is coming up.

Regards

Margie

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Helen,

 

So good to hear from you! Yes, I think it's so easy to assume it's the change of brand but I'm honestly not convincedSmiley Happy.

 

I had MR last week and results this past Friday-I'm really pleased that my cancer continues to shrink so we're doing another MR in 3 months and just waiting to see how much more it will shrink-it is looking more likely that I will be able to have lumpectomy (at least to try and remove it all) and if that fails...then mastectomy. 

 

But for now-just the Letrozole since it's doing it's job.

xxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Marla - good to hear from you. I found my hot flushes/night sweats seemed worse just lately - I was blaming the new brand of letrozole (but don't know how much of it is in my mind😜). I've just got my repeat prescription and when I picked it up it's back to the accord brand - so will see if makes any difference. I'll let you know.

How's everything else with you? Hope it's still all going to plan for you. take care. xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Lady B.....just one Q. about the CBD oil-any unpleasant side effects? I'm only asking because somebody recommended CBD for me, to help me sleep-my sleep is not great (hasn't been for years) but I don't like the idea of taking something cannabis related (I'm a real prude when it comes to street drugsSmiley Happy. Please would you enlighten me when you have a chance, as to how you are finding the CBD oil...thanks!

xxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Lady Baguette-my apologies for the late reply-I don't check this forum often enough. It sounds like we have had similar journeys, and wow-your attitude is wonderfully positive! I'm also so pleased to hear you are a candidate for op then radio. It's amazing how quickly a mastectomy is recommended when actually, for some of us, it isn't *necessary*. 

 

I admire your strength, your determination, your exercise regime, etc. etc. And long may it continue!

 

From one self-employed woman to another....bravo! 

xxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Helen,

 

I hope you are doing well? Lo and behold-when I got my repeat prescription of Letrozole a week ago it was Sun Pharma. So far, so good though-in other words-no significant differences noted.

xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

 

 

Hey maria 13

 

Just read your post and couldn't agree more. I started on Letrozole 4 months ago, I also like you haven't been on the message board recently as I have been coping. Suppose I ought to have done really to support others when I had so much help at the beginning.

 

I am 67 and had been going to the gym again for a year before I found out I had breast cancer. After being told at my local hospital mastectomy and nothing else I got a second opinion from my now lovely consultant who said I had choices for grade 2 no lymph involvement lobular BC long story.

 

I am now on Letrozole for a few months then op and radio. My first letrozole was cipla Jesus was horrendous came on here and read so many horror stories immediately went to docs for accord which was better

 

 

 

Then did a lot of research and it's not the letrozole it's what they wrap round it that causes all the side effects, so i persuaded my health insurance to fund me for the genuine Femara wow what a difference the main side effects I found with the generic one are joint pain and hot flushes and mood change, which are massively reduced with the genuine Femara.

 

 

 

I have also found that sometimes I can go to the gym and joints ache a lot and when I come out they have literally gone. Even though my age i can keep up with most of the youngsters at the gym apart for the extremely fir ones i have always been very active.  I can only recommend exercise for the side effects

 

 

 

I haven't changed my life dramatically but I now take quite a few supplements have acupuncture, see a homoeopathist and most importantly take cbd oil. This drug Letrozole will save my life hopefully, so no way I am going to stop taking it, but neither am I going to sit down and take SIDE EFFECTS without trying to combat them, which at the moment seems to be working. I was on HRT for 12 years and now I call cbd oil my new HRT. 

 

 

 

I am not going to sit down and die with this disease I am self-employed and work about 80 hours a week as most self-employed persons do and don't contemplate giving up any time soon in any respect of either work or this dreadful illness

 

 

 

Onwards and upwards 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Helen,

 

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 BrexitSmiley Happy. That, I'd be willing to make a £££ bet onSmiley Happy

 

Sending lots of love...and hope you have a lovely Easter. 

xx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Hangingon,
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.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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. 

Love

Helen

xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi helenann,

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

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Helen!

 

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?

xxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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?

Love

Helen

xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Margie,

 

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 wellSmiley Happy

xx 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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.

Regards

Margie

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Kathy,

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.

xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Margie,

 

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.

xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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.

Regards

Margie

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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.

 

Thank you.

 

Margie

 

 

 

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

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. 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Yes... 600 mg calcium with vitD twice a day👍🏻

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you Christine. I’ll start doing pelvic floor exercises and see if that helps.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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.