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Letrozole Side Effects

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Re: Letrozole Side Effects

Thanks Helzie,

 

So far so good! Smiley Happy

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Member

Re: Letrozole Side Effects

Yes, Jo please do persist as they're an important part of our treatment and as stated before not everyone has side-effects. Also from what I've read even if there are any in the beginning, often they can subside. Let us know what it goes and best of luck!

 

 

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Member

Re: Letrozole Side Effects

Hey hey 

Ooh so that may explain why im not on accord now and im on glen msrk few aching musckes but ny first scsn since diagnosis showed considerable shrinkage. So il carry on with them good luck anyone starting then xxxx. =+h+k

 

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Member

Re: Letrozole Side Effects

Hi Helzie,

It's costing a lot of money, I suppose if they are willing to spend so much on keeping us alive the least we can do is to take the tablets.

Your message is so helpful, thank you.  I'm just a huge wimp!

Best wishes 

Jo

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Member

Re: Letrozole Side Effects

Hi TKN,

Thanks to all the positive messages here, I've just taken my second one this morning.

Another step forward....Good luck!

Jo

 

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Member

Re: Letrozole Side Effects

Not everyone reacts the same JL as I've been taking Letrozole for over 3 years now, with little or no side-effects at all! Occasionally very mild, barely noticeable joint pain which subsides very quickly. While I am tired, this could very well just be the product of all the treatment in the last few years. So I would definitely try it if I were you!

 

I started on Accord brand and haven't found much difference with the others, either. The pharmacist (part of a chain) took me aside one to explain they may not be able to get this one and when I asked why she said it was all down to costs. Apparently each pack costs £180.00! The current one is a Sun Pharmaceutical one. However, have heard of many others who favour one brand over the others.

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TKN
Member

Re: Letrozole Side Effects

Hi,

The brand is Cipla, only my second tonight so we'll see how I get on, fingers crossed!

I was taking to a friend of mine today who has been on the same and hasn't really suffered at all so it all depends I guess.

Tx

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Member

Re: Letrozole Side Effects

So sorry to hear you are so far from here Chelle, ah well, maybe we can compare notes on here.

 

Tattooed and bald! What a life. 

 

Happy Days

 

Jo

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Member

Re: Letrozole Side Effects

Hi Jo

I am up in Liverpool. Hope your Rads go ok as well.

Also I am on Manx brand of Letroxole 

 

Keep smiling 

Chelle x

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Member

Re: Letrozole Side Effects

Hi Cazzy,

 

Thanks so much, I'm crossing everything and hopeful.  The brand is Cipla.

 

I hope the side effects minimise for you.

 

Good luck xxx

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Member

Re: Letrozole Side Effects

Hi Chelle56

 

Thanks so much for your response its given me a boost, I'll take your advice regarding the timing of Letrozole.

 

I hope your radiotherapy goes well on Monday.  Just to say, I'm at Maidstone in Kent in case you are there too. 

 

Good luck with all the treatement.

 

Jo

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Member

Re: Letrozole Side Effects

Hello

I dont blame you dreading the side effects what brand are you  on? Eveeyone varies when they take it I take mine a round tea time and on Glenarmark originally sches and pains in legs especially when got up but now im settled with it. Hope you dont suffer with any side effects

Xxz

Cazzy xxx

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TKN
Member

Re: Letrozole Side Effects

Hi ladies,

I started on Letrozole yesterday, I had a lumpectomy on the 16th January and am ER positive, HER2 negative, grade 1 tubular breast cancer.  Radiotherapy will start prob beginning of March for me.

I'm feeling quite energetic at the moment but realise I'm only half way through treatment so I do need to pace myself.

Dreading any side effects of Letrozole, how long does it usually take? I know its different for everyone so just an idea would help.

I'm also taking mine in the evening before bed.

Tx

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Member

Re: Letrozole Side Effects

Hi JoLowe

I have been taking Letrozole for the last 8 weeks. I take it around 6.00 pm and so far only side effect has been minimal hot flushes.

I too start radiotherapy on Monday

 

Keep Smiling, you will get through this x

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Member

Re: Letrozole Side Effects

Hi Alibobs,

 

Thanks so much for the positive post.  I have the boxes of Letrozole but can't bring myself to start them. I'm due Radiotherapy next Monday and thought I would hold off until after that.  Every part of this cancer treatment holds its side effects and as you say we are all different.  Fingers crossed for everyone going through this.  Keep as well and exercised as you can I think it helps. 

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Re: Letrozole Side Effects

That’s fantastic. I’m happy to hear that. I didn’t realize osteoporosis could be reversed. That gives me great hope that I can get better too. 

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Member

Re: Letrozole Side Effects

All a great start Marjie, let me know if you get any relief.  
Ive recently had a win..... had my bone mineral density test last week, and the initial one 12 months ago reported osteoporosis in my spine.  I’ve exercised and changed my diet and it’s paid off, no longer have osteoporosis it’s reduced to osteopenia (& I’m still on n letrozole!) so glad for the small reward! 

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Re: Letrozole Side Effects

Thank you for the advice. Honestly I am just not able to add more outside appointments at this point. I can barely get up off the couch. But I have now done some research and I have ordered magnesium, fish oil and vitamin d supplements.  I have looked into diet recommendations and this will be harder for me. The idea of giving up dairy just doesn’t seem possible. Also, apparently even heating up foods causes problems. It hardly seems reasonable to suggest eating only cold foods. But I can give up red meat and substitute cornstarch for white flour easily enough. And eating more fruits and vegetables seems like a no brainer. So we will see what happens. 

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Re: Letrozole Side Effects

Marjie

Have you sought advice from a holistic GP?  I had aches and pains until I decided to consult holistic practitioners. Also, I swear by a glass of freshly juiced celery juice on an empty stomach each morning.  Has changed my life and cleared up my arthritis too.  Increase your magnesium supps as will help to relax the joints.  Cut out all sugar, and cut down meat and dairy as they are acidic and inflames the joints.  Go alkaline as much as you can.     Don’t just rely on medical doctors, need a holistic approach,  seek alternative options to back up your meds.  Good luck.  

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Member

Re: Letrozole Side Effects

I had a horrible diarrhea problem a few months ago and after having no luck with my Drs solving it I finally decided to try going off of all my meds except for my bipolar meds which I’ve been on for 25 years. After 2-3 days the diarrhea went away so I started reintroducing each med one by one. Turns out it was the lisinopril and metoprolol that we’re causing it. Since then I’ve switched to Norvasc and except for a couple of times I ate ice cream the diarrhea hasn’t returned. I just wish the joint and bone pain issue, that I now am convinced is caused by the Letrozole, would clear up as quickly. I stopped the Letrozole last week and I’m going to give it as long as it takes to  see if the side effects clear up. I’m not taking this horrible med any longer. 

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Re: Letrozole Side Effects

I understand your statement to not stop the med without talking to my Dr but I have been dealing with this for four years now and it’s gotten progressively worse. Initially I walked with a limp but now I’m on a walker and can barely even stand up. I actually had to crawl into my house the last time I went to a Dr. appointment. I almost never go out and when I do it takes me days to recover. I live on my couch. I can’t do ANYTHING. I lost my job. I’m only 52 and I feel like giving up. I have talked with my Drs (my oncologist, my FP, and two orthopedics) and I’ve tried three different meds and I’ve stopped for a month a couple years ago and it didn’t help, so the oncologist says it’s not the meds causing my problem. One of the orthopedic Drs just told me to lose weight and sent me on my way. So last week I finally stopped again and I don’t plan on going back on it. It’s my only hope—that if I give it enough time the legs will get better. I read someone in one of these chats was feeling better after ten months. I really don’t feel I have any other option. I’ve been on these meds for four years and my bloodwork always looks good so I feel like I’m in the clear with the breast cancer. At this rate it’s not going to matter anyway, as there is no way I can get out for treatment if the cancer does come back. 

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Re: Letrozole Side Effects

I had a lumpectomy for non-invasive DCIS 10/2018, followed by 6 weeks of radiation (Post-menopausal). I started Letrozole at the end of January 2019. My manufacturer is Apotex. A couple of months later, the joint pain started in my hips, thighs, shoulders, and lower back. Later on, I developed pain in my feet and hands also. My primary doctor recommended physical therapy, which was very helpful. I continued the exercises after completing therapy, and I started massages twice a month with a licensed massage therapist. My symptoms slowly improved. Recently, I tried Dr. Motions compression socks, and I notice three weeks later that I had more improvement in my joint pains: hips and thigh especially and feet. My massage therapist has been working on my shoulders and lower back and both areas are much better especially during the night. I am continuing with these efforts as I decided not to take pain medicine to protect my stomach. I still struggle with fatigue, and I have to rest more after I come home from work. I am sharing these efforts, though I am aware people respond differently to treatments. I encourage my fellow survivors to try a variety of strategies to see if any will work to provide a better quality of life before making the big decision to quit. Letrozole is tough, but hopefully, more of us can stay the course.  

 

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Re: Letrozole Side Effects

Hello Dear Chat Members,

 

I wanted to tell my story regarding my experience with Letrozole, in case it helps inform anyone else about whether to take it.  Earlier this year the oncologist switched me from Tamoxifen to Letrozole, after I underwent a hysterectomy (and so was postmenopausal.)  I was on Letrozole for 4 months and had terrible side effects.  I am 50 years old, 120 pounds and big into yoga.  After about three months on Letrozole, I couldn't get into lotus position anymore due to terrible knee and ankle pain.  Even daily activities were painful: taking my shirt off hurt my shoulders, getting out of bed in the morning, I would limp like I had arthritis, due to the pain in my feet and legs.  I know that Letrozole is more effective than Tamoxifen in protecting people like myself from recurrence (Stage 1 breast cancer, hormone positive), but I was getting seriously depressed from the pain and the oncologist agreed to switch me back to Tamoxifen.  Good news!  The side effects have slowly diminished and I am able to do yoga again without pain.  It took about a month for the effects to wear off.  Tamoxifen has its own side effects (hot flashes) but much more manageable.   For me, the slight difference in effectiveness between Letrozole and Tamoxifen is worth it for the quality of life improvements.  I wish everyone on this group health and peace.

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Re: Letrozole Side Effects

Please let me know how was your appointment?
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Re: Letrozole Side Effects

Hi, I would like to share my concerns with you. My mom is 74 years old, she had a mastectomy and she started taking letrozole. She had osteopenia but I don't know if this pill is going to be worst, yesterday told me that she had pain in one of her legs. I was reading this forum and I am asking you if someone has stopped taking this pill. I highly appreciate your comments.
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Re: Letrozole Side Effects

Hello dancingpip,

 

Would it be too much to ask for a "roundup" of the research that you did? I am trying to find some basic statistics i.e. post menopausal women who took Letrozole for five years following breast cancer reduced their remission rate by ???? versus the same number of menopausal women who did not take Letrozole.

 

Another problem that comes up reading masses of medical tests, is just that their goal, of course, is focused on the medication and the side effects are given second fiddle (bone loss, arthritic pain, etc...)

nk you in advance. Been on Letrozole for four months. Osteo Tscore is -3DS. Dizziness, nasty diarrhea

 

I would love to go into appointment with Onc with some ammunition.

Thank you in advance.

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Jmm
Member

Re: Letrozole Side Effects

I appreciate the side effects are horrid but please do not stop taking Letrozole without discussing with your oncologist. For me the permanent exhaustion was untenable and I agreed with my oncologist to take myself off it. It's an informed choice but I confess, my energy levels are still not great. Residual effects?
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Re: Letrozole Side Effects

I absolutely hate the side effects from this medicine!
I am seriously considering stopping after a little more than 2 years. God bless us all 💕
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Re: Letrozole Side Effects

Thanls Sue and Butterfly x
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Community Champion

Re: Letrozole Side Effects

Afternoon Ladies
I've been on letrozole for about 18months now. In my experience, joint and bone pain comes and goes. For me, it can attack one area of my body, but will go again in about 6 weeks. This week, seems to be my knee!.
I was advised by my oncologist not to stop taking it. If I can't manage, then there are other things they can try.
Try to bare with it for a while.... It can settle down. Go back to your oncologist if you are unable to manage.
Best wishes
Sue xx
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Re: Letrozole Side Effects

Hi Ali, so sorry to hear that you have such awful aches. I have had days where I can hardly hobble from one chair to the next and is only partially relieved by painkillers, but then on other days it seems better. Really weird! I wasn’t sure whether it was wholly down to the Letrozole as also have Herceptin and Pertuzumab every 3 weeks and I had Zometa on the last cycle too.
The fact that it’s not horrific every day makes it more manageable but I haven’t yet had a day where I haven’t taken painkillers.
Hope you feel better soon, or at least find a way to manage. Sending you hugs. Xx
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Re: Letrozole Side Effects

Hi I am 51. I finished chemo 11 weeks ago and had a masectomy andxrecon 8 weeks ago. I stared letrozole 12 days ago but by he end of day 4 my knees were so painful i coild barely walk. I had done a 5k jog and walk so thought it was that but i had done the same the week before and had been fine. The only difference this time was that i had started letrozole 3 days before!

But 3 days later, after only taking letrozole for 7 days, the pain was so much worse. I cant wear jeans my knees are so painful! I went to my gp and cried. She told me to stop taking the letrozole so i did for 3 days to see if things improved but they havent. My onc and bcn both said keep taking it.

I took one yesterday and i am keeping the pain controlled with alternating painkillers. This morning i feel rough with my knees, legs and ankles being really painful. I really dont want to take it anymore!

I feel I've done the chemo, I've dine the masectomy and now the horm9ne treatment has absolutely floored me after just one week!
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Community Champion

Re: Letrozole Side Effects

Hi, I'm on Teva brand of Letrozole and think I am managing well with it. I'm also on Palbociclib for secondaries, and the two together can make me feel a little nauseous. My GP has no problem prescribing Metaclopramide for this. It's the drug I was given with my chemo. I always carry some with me, but tend to take one first thing in the morning at the beginning of my Palbociclib cycle . The Cipla brand doesn't agree with me at all, and I feel quite fuzzy first thing, with some joint pains. Hope this helps. X

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Re: Letrozole Side Effects

Hope the change of brand suits you better Lupin. Took me 4 chemists before I found one that would supply Cipla so hoping it continues to suit me! Xx

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Re: Letrozole Side Effects

Hi, thanks for replying. I'm on Accord. So that is obviously part of the problem . I'm getting a different one when this pack is. Finished so il let you know. I've also discovered that the blood pressure pill  lisinopril has it as a side effect too. So know doubt the combination . Doesn't help.  I can be fine for a day or two with the loperamide and then I need two . It can be difficult for going out . Yes I get the cramping. I thought about taking something for that but worry that I would just not know when to go. 

       Anyway keep smiling I should have my second year mamogram soon so I'll keep in touch .

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Re: Letrozole Side Effects

Hi there, can you tell me what difference the brand of lexetrole does to the body?
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Re: Letrozole Side Effects

Hi Lupin, interested to read your post about the diarrhoea 🙈 I started on the Cipla brand and took for 15 days with no issues, changed to Accord and have had regular bouts of 💩 along with cramping. Started Accord 18 days ago, and it started after the 6th tablet. I do have IBS and did suffer with the Docetaxol but things were definitely improving before I started the Letrozole after surgery. 

 

Has anyone else had this problem 🙊 What brand are you on Lupin?

 

Spoke to my BCN today and we’ve decided to go back to the Cipla brand (I’ve got 13 left) and see if that makes a difference. I really hope it does and would also prove the difference a brand makes. Will let you know. 

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Re: Letrozole Side Effects

These are some of the side effects I read about if this helps.

 

dizziness, drowsiness, weakness, tired feeling;
hot flashes, warmth in your face or chest;
flushing (warmth, redness, or tingly feeling);
headache;
nausea, constipation;
bone pain, muscle or joint pain;
numbness, tingling, weakness, or stiffness in your hand or fingers;

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Member

Re: Letrozole Side Effects

Hi - I have been on Letrozole for six months. Never had a spinning sensation but do feel quite foggy especially when I wake up. I'm also more tired than usual. I hope your symptoms pass and things improve.  

 

Lesley

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Re: Letrozole Side Effects

Hi, I've switched from Tamoxifen to Letrazole and am coming towards the end of my first packet, but have noticed that I feel dizzy in the last couple of days, it's a bit like sea sickness, and last night I felt like the room was spinning when I went to bed.  Is this normal, will it pass?  I was really lucky and didn't suffer any symptoms with tamoxifen, other than the standard hot flushes.  Thanks x

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Re: Letrozole Side Effects

Iam72 . I have the sweats and painful joints .been on letrozole for two years this year. I also have diahreaj. It's so annoying .i take Imodium most days. Doctor knows . I am now going to check the kind of pills and see if makes make a difference. Being older I don't have to worry about going to work as I feel that must be very difficult for people. I took thrombosis after the operation and of course that took months to sort..

   I now have osteoarthritis in my right leg and am doing exercises to try and straighten it . Same one as thrombosis. 

        Everything does get to me at times and my poor suffering husband. 

 

      Anyway let's hope things improve with time.   Lupin 

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Re: Letrozole Side Effects

Hi. I am 73 in May and been on letrozole just coming on two years. I have the night sweats aching bones but have osteo arthritis in a knee so getting Physio . To help it I have the problem of diahreaj  about two hours when I eat after the pill so now have Imodium from doctor plus cocodamol which helps. I think about my age it's hard because you get slight  nervous problems and this little pill can emphasise them . I also took deep vein thrombosis after the operation and that took ten months to sort out . Yes I get weepy but it's frustration as I still want to do more . I'm pleased to hear your complaints as I don't feel so alone. My poor husband copes brilliantly., bless him . I shall now look at the make of the pills and see if the pill matters.

  Keep smiling .lupin.. 

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Re: Letrozole Side Effects

Hi Corina,

not too good news. Got taken off the Exemestane about a week and a half before Christmas. Developed same effects as letrozole. Felt like I was going mad and had many tears. Had lovely rest off tablets for a couple of weeks over Christmas. Went back on letrozole, terrible, then changed back to Exemestane. OK for a week and a half then back came all the side effects. Off everything now for six weeks then have to decide whether to either risk not taking anything or combining one of the tablets with anti depressives which have their own side effects. Feel quality of live is as important as quantity. Even on the tablets there is no guarantee the cancer will not return. Hope you’re having a better time on them than me. I wish you well and will let you know how I get on after Easter. Would love to hear from you again. Xxxx

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Re: Letrozole Side Effects

Was the rotary cuff to do with the tablets? I have that too!
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Re: Letrozole Side Effects

 
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Re: Letrozole Side Effects

My problems with Anasrozole were confusion, tired, exhaustion, feeling like I got hit by a brick wall. After two weeks, I had to stop. It was affecting my whole life. They wanted me to try again but I declined profusely! I’m on Letrozole now for ten days now. I keep falling asleep, hot flashes are worse than ever. Feels like pins and needles running through my body. I’m recovering from rotator cuff surgery. They had me wait until Vicodin was out of my system. Only took them fora few days. Anyone else have these problems? I nod off all day long. I go out and I’m so tired. I get out and walk around for exercise. If this tiredness doesn’t go away soon, I don’t want to keep taking this. I had a 6mm small lump, 2 lymph nodes, chemo 4x, 30 proton therapy treatments. 

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Re: Letrozole Side Effects

Hi Lesley,

thanks for your reply and I'm about to start the drug and I've asked for Accord brand, so I'm going to give it a go and see how I go. I do walk alot with my dog each day and have lost 2stone since 2016 and become fitter generally, so I'm hopeful that it won't feel too bad after a few months. 

The predict calculator is useful and shows pros and cons of taking it in percentages...difficult to judge as we are all so individual.

I wish you all who added their thoughts good health

Lin

 

 

 

 

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Re: Letrozole Side Effects

Hi ladies I am on my fourth year of letrozole I must admit I struggled at first on the cipla brand but then changed to accord brand which I've been fine with yes I am stiff some days but could be my age we all get joint pain of some description even without these tablets my doctor stipulated accord brand on my prescription and I must admit my local pharmacy have been brilliant one thing I must say ladies is have your cholesterol checked whilst you are taking it I have mine done every year it can have a tendency to raise it mine jumped up a bit so I started taking benecol and it dropped currently 4.8 which is fine it does say on the leaflet enclosed about cholesterol my doctor said no problem we will do every year hope this helps lots of love Judi xxx

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Re: Letrozole Side Effects

Thanks for the encouragement. 

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Re: Letrozole Side Effects

Hi,

It may be the case that people with bad SE from Letrozole might post more, giving the impression that most people might expect to feel awful on Letrozole. I’m 56 and been taking Letrozole for just over a year. At first I had several hot flushes a day and felt like an elderly person, very stiff and aches with painful knees. I was prescribed Naproxen for a while to take at night to help with knee pain and stiffness when I first woke up.

But after 3 months things slowly improved. I still feel stiff when I first wake up and after I’ve been sitting down for a while. But I no longer have any pain. I do have to deal with symptoms of vaginal dryness due to the lack of oestrogen - that is my worst symptom. But through trial and error and trying different vaginal moisturisers etc things are much better. Apart from that I feel fine. I don’t have hot flushes or night sweats and don’t have trouble sleeping. I haven’t so far experienced Hair thinning or insomnia. I’m a little less bendy so would probably find yoga a bit tricky but I walk my boisterous dog for an hour every day in the park. I walk quickly and always feel more energised when I get back. I too put on weight during chemo, due to a combination of steroids and eating to feel better I put on 2 stone. But in the 2 years since active treatment ended I’ve lost 1.5 stone by joining Weight Watchers with a friend (much better doing it with a friend). It’s been a slow weight loss with ups and downs, and I’ve got a way to go as I was overweight before the chemo! It is difficult but I just wanted to say that if you are reading this and you’ve been prescribed Letrozole, it may not be as bad as you think, you may only have a few of the side effects associated with Letrozole and they may only be mild. And that for some people it is possible to lose weight while on Letrozole with the right support. I realise I’m really lucky that my side effects eased up and that I feel really good most of the time.

Baz x