Letrozole - just as horrid as anastrazole?

[Flan]

Hi 

I have been off the letrozole since January 1st my hands are a little better, I see the hand Dr on the 16th, it started as trigger finger before BC, but got much worse on the letrozole, I will know in another week, I was great at the beginning with letrozole I went 5 months with no side effects, thenI had heartburn, went off for two weeks then tried anstrazole that one was terrible, it effected my mind, my bone’s my overall health, I got off that quickly, went back on letrozole for 9 weeks,off again now until the 14th, it builds up in your body, and it’s toxic, I will start back with 1/2 pill and work up to full, that’s the only way I can take it.

I will have shots for my hands on the 16th, hope they help, it’s not carpel tunnel I know that for sure, one of the side effects of the Al is trigger finger.

hope this helps,

Trish

[Seagulls]

Was the stiffness in your hands caused by carpal tunnel syndrome? I had this pre new primary breast cancer and I can feel twinges of it again particularly in my left hand which I didn’t have carpal tunnel surgery on.

That’s after two weeks of letrozole tablets. And a lot of AdCal3 ones.

Seagulls

[Kellym38]

Trish,

I went off Letrozole Dec. 14. My hands were so stiff and sore I couldn't pick up anything. I am supposed to go on another one called Exemestane. I had right sided 3 cm invasive lobular carcinoma with oncotype score of 25. I have a 12% recurrence rate after 9 years with the AI's.It hadn't spread anywhere. But, this is so darn scary.  I also had lumpectomy and although for my age 72 they didn't recommend radiation my oncologist said to do it as I have osteoporosis and she only thinks I can do the AI's for 2 years and not the 5 years. My email address is:

marcia_38@hotmail.com

I haven't been getting these messages but happened to clean out my junk folder and found it. So is anastroazole worse then? Have you tried both letrozole and anastrazole?

Thank you Trish,

Marcia

[Flan]

Hi Marcia.

I’m sorry it has taken me so long to get back  to you, I found your reply by accident, yes I tried both letrozole and anastrazole, didn’t have good results with either pill, I went back on a 1/2 dose for 3 weeks then full dose, it was good for 9 weeks, I have a trigger finger and it’s making my hands very sore, I’m having trouble lifting things and doing my hair, I’m going off the letrozole tonight, and back on the grapeseed extract, I get it from Amazon, it comes in capsules, I empty two in a cup and add warm water, taste is fine.

I had triple positive breast cancer in the right breast, it was 6mm and accompanied by DCIS which I think is a good thing, I had my mammogram December 1st all clear, saw the oncologist on the 19th blood work normal, he told me it was a tiny cancer and we’re well past all that, so I take it I’m in the clear, I don’t see him again until June, I had a lumpectomy + radiation, no chemo TG.

I don’t know what to think about the pills, I think I will stay off for awhile, and see if my hands get better, also my knees are starting to act up, so it’s time to take a break, when I go back on I will do 1/2 a dose for 3 or4 weeks, and then full again until I have a problem, that’s the only way I can live with it, how are you doing? Are you taking letrozole? I hope you’re doing well on it if you are.

best of luck,

Trish

[Kellym38]

Trish,

Thank u for getting back to me so quickly. How much grape see oil do u take and how do u make tea out of it? I have been doing a tablet of Letrozole every other day at 2.5 mg and that helps with symptoms. Good idea about taking a half. I am 72 so feeling the same about quality of life but I sure don't want a reoccurrence. I have been taking DIM + 13C by seeking health before I started the Letrozole. What type of cancer did you have? 

Thank you for sharing.

Marcia

[Flan]

Marcia.

i switched to anastrozole which was worse than letrozole, I had terrible side effects, I went off it and took grapeseed extract, I made tea out of it at night, I’m much better, but ready to give letrozole another try, I will take half the dose as I’ve read it’s just as effective, if that doesn’t work and the side effects come back, I’ll just take my chances, the quality of life is more important, I’m 77 years old, and these pills build up in your body and become toxic to older people. I hope this helps you, 

if you’re young I would stick with it!

all the best,

Trish

[Kellym38]

Could u please tell me what advice you gave that helped? I am struwith the side effects of Letrozole. 

Thank u,

Marcia

[Jill1998]

Great. 

[Flan]

Thank you very much for your help, it worked!!

[Jill1998]

You can also just click on Cherry’s avatar ( the little head ) it will bring up her profile and underneath her face will be the words “ send message “ and you can send her a message .

[Jill1998]

Hi if you look at the top right hand corner you will see a pink envelope if you click on that you will be able to send a message 

here is a link to the instructions . https://forum.breastcancernow.org/t5/How-to-get-started/bd-p/welcomegetstarted

[Flan]

Hi Cherry.

they took my email out, because it’s a public forum, they say do it privately, I don’t know how to do that! Too bad that would have been nice.

 You didn’t say how big your tumor was, was it caught on a mammogram or did you find it yourself? mine was a cluster of calcification and I had a biopsy to find out what it was, the biopsy removed it, and when I had my operation they said they found DCiS in Situ, it was Er+ PR+ Hers2+ the tumour form the biopsy was 6mm early stage TG.

The weather is really nice now for walking, way too hot in the summer, I also like to work in the garden, as it’s boring sitting around.

We may get some of this hurricane out in the Gulf of Mexico, they expect it here by Friday late afternoon, we could use the rain, I hope Florida doesn’t get hit as bad as they say it might, we lived in Florida and went through two in 2004 scary.

I hope you’re doing well, looks like you have a good team working with you.

all the best,

Trish

[Jill1998]

Looks they did it while I was posting !!! 

[Jill1998]

Hi Trish , best private message your e mail address to Cherry . The moderators will remove it to respect your privacy as this is a public forum , anyone can read your posts . You can edit the post by clicking on the 3 dots .

[Flan]

Thank you Cherry, I will definitely look that diet up, I’m game for anything that helps!

I saw my new doctor yesterday, he’s lovely, he’s willing to give me medication for anxiety and to help me sleep, last night I slept through the night it was wonderful.

Hope we can do this.

Trish

[Moderator note: personal email address removed]

[cherrypiex]

Hi Trish

Lovely to hear from you.  I would love to tell you more about this diet!  It's fascinating!  Quite a body of doctors expound on the benefits of certain foods in fighting cancer - they are on youtube. Rainbow Diet (which is based on the Mediterranean Diet, is interesting. First of all it seemed a bit harsh, but I am getting into it and, if you can believe it, you are allowed a glass or two of red wine several days of the week!!  

Are we allowed to swap email addresses?  Perhaps this is not allowed? I would love to swap life stories!!  But will understand if that is not what you want.  I am happy to give you mine - but don't want to break the rules!!

Hope you continue well and wish you the best.

Cherry

[cherrypiex]

Hi Rory

So sorry to hear that you are having a difficult time.  Just thought I would be in touch to say that I have weighed it up and, as I am in my early seventies and cannot see the logic of deferring happiness, I have made the decision to go native - no hormone treatment - in favour of a dietary and lifestyle approach.  I am going to follow the Rainbow Diet as advised by Chris Woollams of canceractive.com. 

A few weeks ago I had a consultation with my oncologist and explained that, according to the statistics, the advantage of taking the drug was so marginal that it was not worth it.  She was very understanding and helpful with my other questions. 

I really wish you well and hope you reach the right decision for you.

Cherry

[Flan]

Hi Cherry.

So good to hear back from you, I’m glad you’re doing well!

my week hasn’t been great, still having side effects from these dreadful drugs, although most of the pains are gone, now it’s digestive,  I’m very stressed, I see the doctor tomorrow, I may ask for a anti depressant to help, he’s my new GP.

I haven’t told the oncologist about stopping yet, I think I’ll keep it to myself until I see him in December, I have my next Mammogram 1st of December fingers crossed, I did read somewhere that if the surgeon got it all there’s nothing to worry about, in my case the main tumor was taken out on the biopsy, what was found after surgery was DCIS in Situ, according to a friend whose a radiologist that’s a good thing.

what is your diet? Do you also exercise?

i try to walk 3 days a week, I’ve always eaten healthy, but have added flax seed to cereal and I make my own muffins with that too. Lots of nuts and fruit also.

i read that sixty % get a recurrence if they don’t take the drugs, without them my number is 25%,  with the drugs it cuts it 40% that’s only 10 it’s not enough to live in hell for the few years you have left, I also think the ones that get it back would anyway, no matter what they took, 

where in England are you? I lived in London in the 60ies before I came to the States, it was fabulous, my friend Sophia lives in Portsmouth she’s very young met her over here 8 years ago at a resort, we do FaceTime and she has been to visit many times.

let me know how you’re doing, you’re on my prayer list, I know we will make it through no matter what.

wishing you all the best,

Trish

[cherrypiex]

Hi Agate

I agree with you on that.  Everyone has to weigh up their own situation and make that decision.  Whatever you decide there are no guarantees.  I hope you continue well.

Warmest wishes and thanks for being in touch

Cherry

[cherrypiex]

Hi Flan

Lovely to hear from you, thanks so much for replying.  I am totally in your camp, in your seventies it has to be about quality of life now.  No point in looking years ahead.  I am feeling great thanks.  I am getting used to this healthy diet and feel energetic and positive.  Living for the day.  I do hope you continue well.

Warmest  wishes and thanks

Cherry

[cherrypiex]

Hi Trish

I was so pleased to hear from you - thank you for being in touch.  I am sorry buy not surprised to hear that you did not get on with those drugs - it seems to be the common experience.  I am hoping that a healthy lifestyle will help stop a recurrence. (But even taking the drugs cannot guarantee a non recurrence!)   I would probably give it a go if I were in my 50s but I am too old to look years ahead - I need to enjoy life now. I am glad you are feeling better since ditching the drugs. Certainly this scrape with BC has made me savour every day.  I hope you feel the same. 

What a pity you live such a distance - otherwise I would suggest we met up for a coffee and chat!!  Never mind it's so lovely to hear from you.

Warmest wishes

Cherry

[Flan]

Hi Cherrypie.

i have been on letrozole and anastrazole the side effects are toxic, I haven’t been well for weeks, I decided to quit and go natural a few days ago, I’m feeling better and my husband agrees with me, diet and exercise, one drink once a week, I’m also taking grape seed extract, I make tea with it.

i live in Georgia USA, and I’m 77 years old I was diagnosed a year ago, surgery and radiation, early stage but high grade, I haven’t told the doctor yet, but I can’t live with the pills.

i hope you’re doing well with your diet, I wish you the best.

Trish 

[Jill1998]

Treatment that suppresses your body’s production of oestrogen in some way - different medications work in different ways . If you have a hormone positive cancer oestrogen can fuel its development or increase the possibility of it coming back .

[Kellym38]

What is an anti oestrogen?

[cherrypiex]

Hi Maryed

I am brand new to this.  I am looking for individuals in their sixties or seventies - I am 71 - who have decided not to take letrozole or any hormone treatment.

In April this year I found a lump and 4 week later had a mastectomy.  The service was breathtaking, awesome!!  Medics and everyone excellent. I managed to avoid chemo and radio - phew.  Very lucky.  But the next hurdle was letrozole but when I looked into s/e it just did not seem to be worth it.  Too high a price to pay for such a marginal advantage.  In my seventies I cannot afford to look too far ahead - live for the day.  Who knows what other horrors lurk ahead!!! 

So, in order to do something positive, I have consulted with Chris Woollams and had a PP.  I am following The Rainbow Diet.  I do believe in a dietary / lifestyle approach but also like the idea of taking control.

So, I am looking for a buddy who, like me, is going without to support each other. 

Would love to be in touch with a like mind.  

Cherrypie

[Flan]

I like you have Hers2+ I’m a triple positive, lumpectomy, Radiation, and then in February 2022 I went on letrozole, having terrible heartburn, and some joint pain, I’m off it now going to try another one, and if that doesn’t work, I’m going natural with stinging nettle, and grape seed. I’m 77 and the quality of my life is important.

i hope you’re doing well with your choice!

[Flan]

I like you have Hers2+ I’m a triple positive, lumpectomy, Radiation, and then in February 2022 I went on letrozole, having terrible heartburn, and some joint pain, I’m off it now going to try another one, and if that doesn’t work, I’m going natural with stinging nettle, and grape seed. I’m 77 and the quality of my life is important.

i hope you’re doing well with your choice!

[Agate]

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]

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]

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]

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]

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

Replies would be most appreciated. 

Elke

[Web]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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!?!?.