72.7K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Letrozole - just as horrid as anastrazole?

57 REPLIES 57
Agate
Member

Re: Letrozole - just as horrid as anastrazole?

Not everyone experiences side-effects, but withdrawal of HRT in May 2018, on diagnosis has been so nasty for me, that I have no desire to accept letrozole. At 66, I don’t expect to live long enough to have a life afterwards especially as the risks of all the conditions I anticipated appearing on my death certificate are increased by the drug. It’s easy for me, as I only had a tiny tumour, negative nodes, Grade I. Admittedly HER2 +, but even so, very limited benefit from longer, nastier treatment. For younger folk, the pros and cons weigh up differently; for me, the chances of dying from non cancer conditions seemed higher with more treatment than without.
Stephanie64
Member

Re: Letrozole - just as horrid as anastrazole?

I totally agree with you. It's not enough for some of us to just be technically alive. However I do respect the personal decisions of all. And wish all the best. I hope New and better medications are disvovered.

Stephanie64
Member

Re: Letrozole - just as horrid as anastrazole?

I took a break from letroxole for 2 months and it was wonderful. I tried exemestane for 1 week, the back pain and sweeping were not duable. I did go back on the let.. And the hip and groin pain came back. I've been on the let.. For 5 years. My Onc... Says they recommend 10 years now. I will do what I can. I know it won't be 10 years. I want the quality of life back.

Sue C
Community Champion

Re: Letrozole - just as horrid as anastrazole?

Hi elke
Yes, sadly I get all these side effects ( and more!).
However, I would say not all the time. I find most things tend to come and go, and some days are better than others.
Sue xx
elke nicholson
Member

Re: Letrozole - just as horrid as anastrazole?

Has anyone on Letrozole suffered from constant nausea, metallic taste and generally feeling awful.

Replies would be most appreciated. 

Elke

Web
Member

Re: Letrozole - just as horrid as anastrazole?

Sorry to hear that you have been so stiff. When I started Letrozole I found it difficult to walk 100 yards, after being a good walker before treatment. I walked a little more every day (stopping at a bench because the effort made me feel dizzy) and 5 months later can now do a 5 mile walk again. I also started swimming twice a week.
I cannot pretend that this has been a miracle cure. I still have joint pains (particularly knee, ankle, hip and lower back) after exercise and cease up after sitting too long. However, with the help of regular paracetamol and 10% Ibuprofen gel on my knee I feel I am able to cope. I still have days when I give up because of fatigue and pain, but these are few and far between now.
It has been difficult, but exercise has definitely helped me get control of the fatigue, stiffness and pain.
I really hope that you are able to find some restbite. Best wishes to you
Wendy x
Brendima
Member

Re: Letrozole - just as horrid as anastrazole?

Letrozole And Anastrozole both give me severe joint and muscle pain. Some days I feel stiff as a board and wish I had a wheelchair. It’s an effort to walk. I’m taking a break from tablets. I may go back on Letrozole which I find slightly better pain wise. I’ve been on the tablets for 17 months now
Brendima
Member

Re: Letrozole - just as horrid as anastrazole?

I started on Letrozole for 9 months but it made my joints ache all night long. I changed to Anastrozole which causes joint/muscle pain all day long but eases when I’m asleep! Some days I just want to stop trying to walk - I feel I should be in A
wheelchair! My legs feel like lead and it’s s struggle to walk. I saw the consultant today and I told him I could no longer tollerate the pain. I prefer quality of life to content. I’m 60 in May but my body feels 90 at times! I’m having a break from the tablets. I may go back on Letrozole. .
Paintergirl
Member

Re: Letrozole - just as horrid as anastrazole?

Hi all.

I was diagnosed 2yrs ago with HR 8 ductile carcinoma, and went on Letrozole to shrink it because it was going into my pectoral muscle.. i had side effects at first, and they got quite mild, and stayed that way..I had a lumpectomy last October, then Radiotherapy January\February. Since then the bone pain has seriously kicked in, as well as all the other symptoms, and I don’t know if at 70 , I can put up with it all.  Has anyone had the same experience as me? 

 

Hugs

 

 

Ruthiesings
Member

Re: Letrozole - just as horrid as anastrazole?

Hi GrumpyTrout.  Give the Anastrozole a try - you may get on OK.  I've been on it for almost 3 years and tolerated it pretty well (I stick to the Teva brand) - my nails are OK and main side effects have been the hot flushes and mood swings.  I'm due bone density scan this summer but my doc says they're running late! I've been taking cod liver oil for yonks so getting plenty of vit D which I think helps.

Laineybo
Member

Re: Letrozole - just as horrid as anastrazole?

Hi Megster

 

 I  have been on anastrozole for 3 years and my nails are flaky and brittle but I  had a dexa scan last week and it was normal so try not to worry

Best wishes x

Megster
Member

Re: Letrozole - just as horrid as anastrazole?

I, too, wonder if the terrible state of my nails is indicative of what might be happening to my bones with Letrozole. I had a satisfactory bone density scan when I started taking it, six months ago, but my nails were fine then.
ann-m
Community Champion

Re: Letrozole - just as horrid as anastrazole?

Thanks for posting that Lovemygarden, it’s good to hear positive experiences as well, as understandably, those having problems will post, not usually those who are doing ok with it all.
ann x
lovemygarden
Member

Re: Letrozole - just as horrid as anastrazole?

My history is similar to yours - diagnosed 3 years ago and taking Letrozole.  I don't know if I have just been lucky but I have very few side effects.  My joints ache sometimes, especially the knees and wrists but it is not severe and since I am nearly 70 it might be due to age rather than Letrozole.  Also flaky and spliting fingernails.  I have no idea what percentage of women have the really life changing and distressing symptoms that are mentioned on this site, but to anyone reading these comments I would like to say that not everyone experiences these horrible side effects and if you are undecided to give it a go as you might be one of the lucky ones who can tolerate it.

Carolyn52
Member

Re: Letrozole - just as horrid as anastrazole?

I took anastrozole for 3 years but the original brand arimidex ..it was a lot easier to tolerate than letrozole that I take now ...I have Accord brand now as a repeat prescription.
GrumpyTrout
Member

Re: Letrozole - just as horrid as anastrazole?

I've been on generic Letrozole for the last 2 years and am due to see Oncology about switching to Anastrazole because of male pattern baldness. I am waiting for blood test results to see if Letrozole has triggered an epigenetic response in my own genetic code - I have 4 brothers with male pattern baldness.

A bit concerned that Anastrazole may be more painful than Letrozole? I have found that I get least side effects with Dr Reddy's Letrozole; Accord version leaves me with a constant dry cough. I had my first go with Cipla this month and I never want to touch it again- feels like being coshed and the hot flushes are constant.

whitelily
Member

Re: Letrozole - just as horrid as anastrazole?

Hi Rory I am also seriously thinking I am not going to take anastrazole. I have been on tamoxifen for 4 years but have had to stop taking it. I have appointment tomorrow to discuss the alternatives. Unless she can convince me that there is a major benefit to me (which I don't think there is on the research I have done) then I will be declining. I think it is more important to look at your lifestyle and diet and I dont want to be left with arthritis or osteoporosis and have even read about women having to wear wigs because of severe hair loss. I know not everyone will get side effects and I may not get any but quite a few women do and. I am already living with lymphedema and now have enlarged uterus from tamoxifen it never seems to end. I suppose you have to balance it and in the end make the right decision for you x

ollisj6
Member

Re: Letrozole - just as horrid as anastrazole?

Hi Rory I don't come on to the forum very often now but my story is diagnosed in 2014 lumpectomy/ chemo/radiotherapy/herceptin in 2015I started on letrozole and no word of a lie I wanted to flush them down the loo I started on the cipla brand went to see my gp who changed the brand to accord believe me brands do differ with side effects I couldn't believe the difference in how I felt my joints were as stiff as a poker before but I seem to be fine now the first six to nine months were worse for me I'm year three now since diagnosis and doing fine I can totally understand how you feel but I decided to continue as my breast cancer was hormone positive+++ so hormone therapy  to decrease the oestrogen was the way forward for me hope this helps love Judi

ann-m
Community Champion

Re: Letrozole - just as horrid as anastrazole?

Hi Rory,
It can be alarming to read about potential side effects, but many women are fine on hormone therapy & tolerate it well or at least find any side effects manageable. Understandably, those with problems will report it, which can be anxiety provoking if you know it is part of your treatment plan.
If you haven't already, then do discuss with your team who will advise, but ultimately how we respond can only be established by trying it.
good luck
ann x
Rory
Member

Re: Letrozole - just as horrid as anastrazole?

Sheels, my tumour was a grade 2 invasive lobular carcinoma. I'm waiting on radiotherapy after recently having lumpectomy. I have to tell you that the thought of Letrozole terrifies me. I am even thinking of taking no anti oestrogen. I'm coming off HRT which I've been on for years-- part of the reason for going on it was bone density loss. I'm already aching with joint pain in knees, hips and back since halving HRT. The hair loss associated with Letrozole fills me with dread. Help anyone! Has anyone decided not to have any of these?

InaP
Member

Re: Letrozole - just as horrid as anastrazole?

I have been taking Letrozole since June 2012.  I tolerate it quite well, but sometimes the joint pain and low back pain are quite bad.  I use painkillers and anti-inflammatories to ease the pain.  I came off the Letrozole for a month in December 2014 for a month and then tried anastrazole.  After 2 weeks on it I felt truly awful.  I had bone pain in my legs and was so ill feeling I had to go to bed.  My breast care nurse told me to stop taking the anastrozole immediately.  She conulted the oncologist who said to go back on to Letrozole.  I manage the side effects and am rarely inconvenienced by them. Next year I will be taken off Letrozole and I am apprehensive about the next drug.  Probably Tamoxifen.  Good luck!

Becky Rawlins
Member

Re: Letrozole - just as horrid as anastrazole?

Why are we all suffering so much after all we have been through when nobody really knows if these drugs are helping us?? I debate with myself every time I take a pill! The Anastrazole nearly killed me do I took a break ( three weeks) pains went away. Now I am on Letrozole ( only nine days) but my nails crumble like a pie crust! They are always tearing at the touch of any fabric . It seems petty to complain about nails when so many have so much worse to endure but I have been disfigured enough because of cancer! Sore and bloody fingers may seem petty but believe me they are not!! I am hoping I will be lucky enough not to have bone and joint problems but if my nails are any indication of bone health, I may be in serious pain soon. 😏
Becky Rawlins
Member

Re: Letrozole - just as horrid as anastrazole?

In response to whomever posted about finger nails: My nails are doing all of that!! How does this relate to the health of our bones!?!?.
Ruth Hill
Member

Re: Letrozole - just as horrid as anastrazole?

I was so very bad on Letrozole I took them back to my oncologist and signed up for counselling , during the weeks I was on them I wept, I sweated night and day, I ached in every joint , and I was very angry with the world. 

Now I am taking exemestane and so much better . Yes I've had a few sweats, and aches and stiffness but I already had MS and arthritis to deal with. 

Wild horses couldn't get me back on Letrozole .. 

Warmest wishes to all in our club xxx

Jill1998
Community Champion

Re: Letrozole - just as horrid as anastrazole?

Hi T,I think there is only a small gain from Letrozole over Tamoxifen post menopause so if you are ok with what you are taking I don't think you are taking much of a risk ,I know a few ladies who are taking Tamoxifen cos Letrozole didn't agree with them.May be worth asking this question in the ask the nurses section ,they may be able to give you more information.Jill.
Twizzle3
Member

Re: Letrozole - just as horrid as anastrazole?

Having been taking Tamoxifen fir the past three years a blood test has now confirmed that I'm post menopausal so they want to change me to Letrozole. Having heard about the side effects and my hot flushes are already horrendous I think I'm going to decline. My cancer was so small stage 1 and I was border line to have the Tamoxifen. I want to live my life not be unable to get around and be in pain....is this wrong? 

Tobie52
Member

Re: Letrozole and fingernails

I have been on Letrazole since February 2016. For the previous 3 years I was oral chemo (Capecitabine) for secondary breast cancer (spine, shoulders & ribs).

I had no problems with my fingernails with the chemo, but now I am experiencing a lot of problems - and I used to take such pride in my fingernails.

They split horizontally, are very soft, have white lines (could be caused by malnutrition) and every time they manage to grow, they start to split again. They are also deformed by ridges.

Has anybody experience these symtpoms and, if so, found a cure for this?

I have not consciously experienced any other adverse side-effects - not even the popular weight gain. In fact, I have lost a couple of kilos!

Tobie x

Babypink
Member

Re: Letrozole - just as horrid as anastrazole?

I have been on anastrozole since end of April and last week has been hell. I feel 100 years old. My hands seize up. I feel sick. Fatigue is incredible. Loss of appetite too. Memory is shocking as is concentration. I've now got palpatations and short of breath not sure 8f that's anxiety and a silly tickle cough. Saw onc yesterday who said come off for 4 weeks then see how you go. I'm low on vitamin D and iron too. I know I need to take tablets but the s/E are affecting my day to day life. I had to leave work this afternoon it became all too much
Sheels
Member

Re: Letrozole - just as horrid as anastrazole?

I was started on tamoxifen 4months ago and developed a large pulmonary embolism so was taken off it right away. Was started on blood thinners and can't take any anti-inflamatories whilst on them.  Oncologist wants me to start on Letrazole but not keen. Going to discuss this with my breast care nurse on Wednesday but wonder if I should try it for a few months and see how I go.........not keen.  My tumour was a grade 2 invasive lobular carcinoma for which I had a lumpectomy and radiotherapy. Any advice would be welcome. definitely gained weight with tamoxifen and lost 1.4 stone since stopping it, terrible flushes still bad.

Jill1998
Community Champion

Re: Letrozole - just as horrid as anastrazole?

Good for you Mary !Quality of life is very important and when the drugs make your life totally miserable you do wonder whether it is worth just taking your chances ,I think most surgeons would agree with your decision.Taking the drugs are no guarantee that you won't get a reoccurrence ,they are doing research to pinpoint exactly who benefits from the meds,good chance that alot of us are taking them with no real benefit,All the best.Jill
Maryed
Member

Re: Letrozole - just as horrid as anastrazole?

Yes I'm just like you and I have stopped letrozole   because the pain is so bad I'd be better off dead.    If they try to force me to take them I shall just dispose of them.    I am almost 73 and they propose for me to take them for five years.  I should be nearly eighty!   Think I will just enjoy my life as much as possible.

 

Hugs

Maryed
Member

Re: Letrozole - just as horrid as anastrazole?

Yes  I tended to suffer from back ache and was having to take Paracetmol all the time before taking letrozole .  I started Letrozole about eight months ago and my pain has gradually become worse to the extent that is is unbearable.  My right hip is the worst and it travels all the way down my leg.  It feels as if my leg in on fire.

 

I spoke to my breast care nurse an said I didn't want to take it any more.   I'll soon be 73 and am not prepared to spend the next five years suffering this amount of pain and she agreed with me.

 

Hugs

Guest user
Not applicable

Re: Letrozole - just as horrid as anastrazole?

Hi I have only been on Letrozole for 3 months.
When I started I got severe joint pain in my knees and hips and could barely move if i sat in a chair for any time. I made an effort to exercise- Long walks and a conditioning programme in the gym and im also taking joint supplements and oil- though im not sure how helpful they are? What has happened is that all the pain has gone from my knees and hips but I now have signifacant pain in my shoulders and through my shoulder blades to my neck.
One thing worth trying is changing the time of day you take the pill. I find taking it in the evening better than in the morning- it seems to have lessened the stiffness hip pain etc during the day
Im really hoping the pain in my shoulders might go as well -but it seems to be staying. Certain movements are so painfull they make me cry with pain. Anti inflamitories help but I dont like to take these all the time. The pain keeps me awake at night. Other than the joint pain I find the hot flashes are not too bad and so far i havnt had weight gain issues.
Trying to work when in constant pain and lacking sleep is a real problem for me at the moment.
Has anyone else experienced the joint pain moving and can/will/might it go if I keep at it?
SallyMP
Member

Re: Letrozole - just as horrid as anastrazole?

Hi Buffy, hope like me you notice fast improvemnet with Femara. I clkeaned the kitchen from top to bottom today - even cleaned the main oven!!!
northumbrian1
Member

Re: Letrozole - just as horrid as anastrazole?

Hi everyone
I started on Letrozole last May (2012). My bone density scan was brill- above normal for my age but my onc said maybe try calcium. I bought some at H&Barrett but capsules gave me reflux so went on to huge 'horse-size' calcium tablets from H&B. I never have bother taking tablets but oh boy- I did with these! Gave them up and eventually nurse practitioner at 1yr check after mastectomy (mast done on Oct 2011) said get calcichew on precription- why didn't some one tell me before? I am a nit! However I found I had aching joints on Calcichew- my hips & in partic my hands were clawlike at times. Since I decided my bone density had been ok & it was just a precaution- I came off the calcichew- and everything went back to fine.
However once the pharmacist gave me a different Letrozole make from my usual(Teva) and I did find they gave me reflux (never had indigestion etc before till these times- could it have been effected by my chemo?). The pharmacist now ensures I get Teva everytime. I did find some relief swopping round the time I took my Letrozole when I was having the bother- now I take them before getting into bed- that seems to reduce any side effects- though Ido itch in bed!

Buffy3
Member

Re: Letrozole - just as horrid as anastrazole?

Ive been on letrozole...various brands and this one..Accord is making me tired, stiff and achy. I spoke to my breast care nurse who said I really shouldbe prescribed femara by gp. Anyway I pick it up tomorrow and I am hoping the side effects subside soon.
SallyMP
Member

Re: Letrozole - just as horrid as anastrazole?

Having gone through various brands of Letrozole and suffering from various S Es on all of them I asked my GP to prescribe Femara, which he has, started taking them on Saturday - so hopefully in a while I will feel an improvement. Not expecting the hot flushes to go away but hopefully the joint soreness will. Lucky in that I have not had any big weight gain problems although I did start to gain some pounds on one of the generics. On the last brand, TEVA, I started feeling as if I had been drugged at times, so tired and really "spacey", also signs of not being quite right were showing in my nails (and hair - loss of shine) - have strong nails normally and that certainly isn't the case at the moment. Love having nails manicured with O.P.I. gel varnish but the last lot peeled off by itself, normally lasts a good 3 or 4 weeks, this peeled off after two weeks. Had nails done on Saturday and one has already come off, so taking it all of on Thursday and leaving to let nails, hopefully, recover. Can only put this down to the Letrozole.
On a positive note - I had my first check up and mammogramme at the beginning of June and no sign of cancer.
Guest user
Not applicable

Re: Letrozole - just as horrid as anastrazole?

HI, I think I must be one of the lucky ones, I have been on Letrozole for three and half years now, and hardly any s e, slight thinning of my hair, no joint pains, I am having hip replacement in Aug but this due to arthritis.
modurham
Member

Re: Letrozole - just as horrid as anastrazole?

I know how you all feel, have been on letrozole for over a year now. At first I was smug and thought I was getting away with se but these last three months or so have been a nightmare. I feel as those every muscle is being slowly affected, it was as though it was working up my body from my knees to my neck. If I do something "slightly" different you can guarantee two days later that joint will be in agony. It is giving me disturbed nights and having to take pain killers which I hate doing.Went for my check up Monday and tried to explain but somehow consultant didn't really listen. Then he started dictating notes - including "tolerating letrozole" and I am going no, no. He did listen then and said "we can't have this" (ie pain) so has given me a 6 week holiday and then I am to go back. He is talking then, if it is the letrozole, of putting me on tamoxifen. Having read up on that not sure it will be an improvement. The other problem is I am alendronic acid for ostepenia which has as its side effects joint pains. I just find it depressing, I was the one that sat on the floor at parties, joined in the grandkids games, suddenly I feel I am an "old lady" and that there is a consequence for every action. How did this happen? Does letrozole really improve your chances as I am not sure I can take this "quality of life".

hazelmary
Member

Re: Letrozole - just as horrid as anastrazole?

In year 4 of 5 years of Letrozole after 5 years of Tamoxifen. My aches and pains only started in year 3 but only another 8 months to go but I have had other SEs including Burning Mouth Syndrome which is very unpleasant.
I have been taking cod liver oil and also glucosamine tablets and they do help along with gentle exercise for the aches and pains.
At Christmas I decided to take a break from Letrozole but after having a full body MRI scan and worrying that the cancer may have come back I decided that it wasn't worth the worry and am now back on it until next year.

GMT
Volunteer
Volunteer

Re: Letrozole - just as horrid as anastrazole?

Hi all,
Don't want to speak too soon, but after 10 months of aches and pains, hands unbearably painful in the morning and horrendous pains in shoulders, over the last couple of weeks pains have really subsided. I had a cortisone injection in my shoulder and finger which had developed trigger finger due to Letrozole 3 weeks ago and this has helped enormously. So if anyone is thinking of giving up, (and id been there too) it may be worth carrying on to see if SE's do improve. I'm sure I read somewhere that after a year or so your body can get used to them.
Gaynor xx

Kirstie
Member

Re: Letrozole - just as horrid as anastrazole?

Hi everyone. So interested to read all your posts. It helps to know Im not the only one. I have been on anastrozole for 6months now my legs are terrible first thing come down the stairs like an old lady!! My wrists have been so painful lately I have had to wear wrist supports to drive my thumbs ache really bad. Had a chat to my breast nurse last week and she got in touch today said the oncologist has told me to come off anastrozole and after a week a new prescription will be at my docs to collect its for exemestrane. I do hope this improves things, what with hot flushes stiff legs and aching wrists my side that I had the masectomy has also joined in today more painful than usual!! Fingers crossed still having to take calcium + vit d chews twice a day after scan showed bone thinning. Genorm I can identify with all what you are saying!!
meggy
Member

Re: Letrozole - just as horrid as anastrazole?

Hi
Just felt like joining in! I'm thinking about giving up anastrozole after 6 months - the hot flushes are horrendous (so sleep deprived) (also on zoladex), joint pain & swelling, also feeling mental affects (no memory). However, also coping with divorce (husband left after 21 years) and my mother died in March so not that great in other ways. Trying to build new relationship but worried that anastrozaole has affected libido.... in a bit of a mess really and maybe just trying to blame the anastrozole. I read on some site that (basically & crudely) it is difficult to feel sexy while on anastrozole. Has anybody else dated successfully while on AIs? Sorry if this is really naff question!! I just want to 'live' while I have the chance...
Hugs
Maggy

kitten_mad
Member

Re: Letrozole - just as horrid as anastrazole?

I am reading your thread with great interest - especially everyone's comment about different brands. I was on Letrozole and coped with it for about 6 months - then the backache was so bad that I phoned my breastcare nurse for some advice. My surgeon let me come off of the tablets for a month and I felt brillliant! Of course, I have to have something and he put ,me on Anastrozole. The SE's were so much better - I really felt like my old self again (well you know what I mean!) Three weeks ago I ran out of tablets and the local chemist had to order them in (must be the only person in my town who has them)! The brand name this time is ARIMIDEX - since taking them my "bad" breast has been extremely sore. Can't lie on my side or front at all. Pain wakes me up every night at around 4 or 5. Have also developed funny red marks on breast which I thought may be due to the recent hot weather and a SE of RADS. Sore joints in fingers starting to come back first thing in morning. Phoned my breastcare nurse again and have an appt in 2 weeks for a quick check. But having read this post the timing with the change of brand could account for this new pain. Do you think this is possible? Has anyone else had the symptoms of the red marks?
Many thanks for any replies that may come from this
K M x
truffle_shuff
Member

Re: Letrozole - just as horrid as anastrazole?

Hi Maltomlin,

I am coming up to 4 years on aromasin, and like all the ladies on here fell about 100, with stiff joints, I am interested to hear that your onc has prescribed a furter 5 years, (I think I have the same onc as you at chrisite), hope so,( I work there so I know the female onc) as even though they are hard to take , I know I will wobble if I dont have any safety net.

I will defo aske her next time if she would consider keeping me on mine

good luck keep well x

Feebs
Member

Re: Letrozole - just as horrid as anastrazole?

I have been on Letrozole for just over six months and the side effects are rotten !!! My shoulders ache so badly and I've always got a pain in my upper arm (feels like nerve pain), if I lift my arm I can also feel an ache in my breast (affected side). I have to take them for 5 years and hope to God the s/e wear off soon. It really does get you down after a while, I feel about 180 !!

x
Lily200
Member

Re: Letrozole - just as horrid as anastrazole?

Hi, I am 4 1/2 years into tablets, first I was given tamoxifen which made me hot and felt like I was wearing concrete boots. I couldn't walk downstairs when i first woke as me feet would just snap and crack and not bend and all my joint become very ancient as well as foot trouble when walking. I was warned letrozole was likely to be worse but it hasn't been. I couldn't shift any weight or the tamoxifen spare tyre effect but as soon as I stopped tamoxifen I was able to lose weight. One onc told me not to bother to even try while on tamoxifen, he was right as I couldn't. The strange thing is that I have no real effects from letrozole now as even the milder ones have either worn off or I don't notice them any more. This could possibly be due to 2 things. Firstly I did a bit of research helped by my chemist and only have one brand of tablet each time. These have the same medical code as my original femara rather than some of the cheaper maufactured ones now available. In the past I found tamoxifen tablets varied a lot in side effects for me personally, according to the tablet coating. Secondly I made a big effort and lost 2 1/2 stones and it wasn't really really hard on letrozole. Suddenly so many of my side effects disappeared that i though were from chemo, rads, tablets, etc. I can now easily get out of a squashy chair after sitting for a while, bounce out of bed, do shoe buckles up, no hot flushes, acid and reflux has gone too etc. I am feeling lucky reading some of your accounts but thought I would post as it might give someone a bit of hope or some ideas to follow. Good luck everyone love Lily x

Guest user
Not applicable

Re: Letrozole - just as horrid as anastrazole?

Hi
I've just finished 5 years on letrozole and have been prescribed another 5 years.
The first few months on the little tablets were hell, and I honestly didn't see how I would manage 5 years. But the s/e did settle down. The aches and pains decreased to a level where after a few minutes up and about they eased. I put weight on, had some bone loss, memory loss, became more hairy but given the alternative, it was ok. I grew used to it.
When my 5 years was looming, I had mixed feelings. Whilst I would have loved to give up all medication and return to my former self (hopefully), I just wasn't prepared to take the chance. Luckily my onc is heavily involved in research at the Christie, and when I went into see her prepared for a difference of opinion, I didn't get it. She recommended that I do another 5 years. No, I'm not happy taking the tablets, but it beats the alternative.
Zeppa
Member

Re: Letrozole - just as horrid as anastrazole?

Best effects for me with Exemestane and Tamoxifen. No reason not to try Tamoxifen if you can't tolerate the AIs. I hate them all!

Southcoastbeachgirl
Member

Re: Letrozole - just as horrid as anastrazole?

Hi Genorm am experiencing exactly the same feelings and pain as you and identify completely with your post. I have only been on Anastrazole since April but feel that it is by far having the biggest impact on my life since diagnosis. the radiologist told me recently that I may be experiencing more pain as I am tired post rads but some days it really gets me down. I have no answers really as I am trying to manage on a comobibaton of paracetamol and anti - inflammatories until I see my onc at the end of the month. Some other ladies on this site have suggested cortisone injections to help but I need to explore this further. Currently feeling totally achy as have a urinary tract infection on top of everything else so have kidney pain too! I hope you do find something that works for you and send cyber hugs in the meantime. I know we must think of the bigger cancer free picture but some days that feels harder than others!