Coming off letrozole after 10 years - Breast Cancer Haven

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Coming off letrozole after 10 years

sandylo profile image

Has anyone come off letrozole after 10 years this is my 4th day now and hoping the horrible side effects get better

20 Replies

I’ve still got four and a half years to go. Was on Letrozole and switched to Exemastane because of joint and muscle pain. Which is about ten percent better than Letrozole.

As it took only two days for the side effects of these drugs to appear, I have my fingers crossed that they will disappear after a few days.

So, please let us know how you get on!!

sandylo profile image
sandylo in reply to Happyrosie

Took my last letrozole on the 30th august after 10 years feel no different so far personally think the damage has been done fingers xd

sandylo profile image
sandylo in reply to Happyrosie

No change so far still in agony and need hip replacement 😥

I will be coming of it soon..what horrible effects you got

sandylo profile image
sandylo in reply to bulldogbyrne

I think i had most of them 😥 ive read it takes 2 to 6 weeks to get fully out of your system just wishing your life away "cancer"routine waiting game x

I've heard that some people get side effects after stopping. I stopped my 10 years in April but had no side effects. I hope you feel better soon.

I have been taking for 5 years now, I don’t really get any side effects, I am probably lucky then.

I am waiting to see if I have to stay on them another 5 years! Mammogram and doctor appointment over due this year due to COVID everything delayed by 3-4 months I am told.

Coming off letrozole it may take a few months to get out system and then see what you feel like.

I have been without it on a couple of occasions for over a week. No Ill effects 🤔🤔🤔 I due to finish feb 2021 but they cannot get the only brand I will take so I off it again.

What effects have you got ?

sandylo profile image
sandylo in reply to bulldogbyrne

Ive got a trigger finger insomnia joint pains going for hip xrays on friday using a walking stick theyre so bad. High cholestral. hyperparathyroid. High blood pressure bottom of left leg deformed i had none of these before i had breast cancer. I stuck the tablets out as was afraid of the alternative. I came off them on august 30th after 10 years and so far no change

bulldogbyrne profile image
bulldogbyrne in reply to sandylo

Sounds awful I did have a trigger thumb physio sorted it I have joint pains..and prob high cholesterol but I not had it done for years...

I can only take TEVA brand any other brand I got worse joint pain and brain fog.

I have ran out now as they dont have my brand...

I do hope you feel better soon, due to COVID, I’m not in Uk at the moment, and can’t see me getting there soon( they’ve shut the airport down) I will have been taking letrozole for 5 years in October, and because I can’t see the doctors in uk, I’m going to carry on, I was told either 5 or 10 years, so I’m not taking a chance, my Knees joints ache, so do my hips, and they click a lot, but better than the other option, take care,

Hi I was diagnosed nearly five year ago I had lumpectomy and 15 sessions of radiotherapy I was given tamoxifen but had to change because of constant recurring polyps in womb was given letrozole but changed to exemestine because of really bad aches and pains in most if my joints and back I still have problems with knees and fingers but trying to put up with it. I work in a school kitchen currently I used to do cleaning aswell but had to give that up because it was too much I still find my kitchen job quite difficult I was wondering if anyone still works and what kind of work and if there’s any advice as to wether I should continue. I’m due my last mammogram in January but will need to continue medication for a further five years not sure if I can keep doing my bit job but not sure of any benefits I could claim if I have to leave

Congrats Sandylo doing the 10yrs! Impressive! Im meant to do 10 too -5 1/2 yrs done......but dont think my bones will take it so planning to stop 7th or 8th year.

Hope you feel better soon. I imagine it takes a while for your body to adjust.

sandylo profile image
sandylo in reply to waveylines

Thanks its been a long very hard road. But i think the damage has been done. I had a mamagram and ultrasound last week it was just a fatty lump so all ok there and had hip xrays doctor ringing due to covid with the results on friday. Im in a right mess now can hardly walk so think it will be hip replacements. It all started within the first week of taking these poisons tried all three but they were all mainly the same. All the best to you x

waveylines profile image
waveylines in reply to sandylo

I hope there is some good news and something can be done so you can be mobile again. Pain is terrible thing to have to live with.

One of my work colleagues had to have hip replacements -she had them done 6 months apart. The difference was amazing. Her damage was from years of horse She was just turned 50.

sandylo profile image
sandylo in reply to waveylines

Im 76 the pain is unbearable most of the time. The only time im painfree is when im sitting down i just want to be normal again as i love gardening and always done everything myself . And bed time is terrible im tossing and turning all through the night and see the clock every hour and trying to get up is horrendous it should have been replaced 12 years ago then i got breast cancer so was put off

waveylines profile image
waveylines in reply to sandylo

Awww poor you that sounds awful. ☹️ Really hope you get a new hip soon. Hugs xx

To sandy lo and all the posters on this thread...... we are all having problems, most of which are not going to go away (with me it’s hypertension, tinnitus, deafness, arthritis and of course the side effects of anti-cancer meds.)

So each day I try:

A few minutes controlled breathing, trying to stay ‘in the moment’

Before I sleep, to think of three things that went well today. I do this through prayer as I’m a practising Christian.

I am so lucky that I am loved and am loving.

Best wishes to you all

Now 6 weeks off letrozole and still in agony had hip xray results doctor made me a referral to the muscularskeletal clinic at the hospital emailedfor an appt but none at the moment due to covid they have my phone numbers to get back to me as soon as one is available. Had an horrendous sleepless night pain everywhere 😦

sandylo profile image
sandylo in reply to sandylo

Surgeon rang me put me on the list for operation for hip replacement will write to me as soon as safe to do so as covidis bad here in stoke on trent. Still in tier 3 . Been to the doctors again this morning with cellulitis in the same leg so on antibiotics now for 5 days really down at the moment so much pain..

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