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I want to stop letrozole

4 REPLIES 4
Jo3694
Member

Re: I want to stop letrozole

I am also on Letrozole and I too am struggling with aches and pains! I started taking it December 2020 and thought maybe I just had got really unfit from not feeling like doing much exercise through chemo and because of lockdown.  Since January I have pushed myself to walk and have got up to 5km but it’s a struggle and then I have no energy for anything else.  And the hot flushes! Never had anything like it whilst going through menopause!
I’m too worried about reoccurrence if I stop taking it.

Standing alongside you x

mumgonemad
Member

Re: I want to stop letrozole

Hi Janipi, thanks for your reply. I was given tamoxifen but it played havoc with my asthma & lungs were drowning so was swapped to letrozole.

I feel your pain of no reconstruction & looking in the mirror 😭

They left me to long after the first operation & I had 3-4 different infections going on & everything broke down & had dark leakage. I was having buts of dead flesh cut off 4 times per week & the deep cleaning was horrendous. 

I had an emergency mastectomy 6wks after lumpectomy op but I had an abscess on my chest wall & another under my arm. Reconstruction was off the table as my body would see an implant as another foreign object & my body would fight it. 

Consultant promised she wouldnt leave me without a boob but 3yrs later I still havent had reconstruction as plastics say I'm too fat 😡

I'm supposed to do another 7yrs of this letrozole but am afraid I'll be bed ridden by then. I did take a 3wk break but already feel the aches & pains in my thighs & struggle to get up the stairs. Used to walk 4mile in the forestry of wales.

Glad your all clear but hugs for life after cancer that noone tells you about xx

janipi
Member

Re: I want to stop letrozole

Hello I have just finished Letrozole after 5 years of Tamoxifen and 5 years of Letrozole. I have had lots of pain and dark moments on these drugs. I did find though that after a while I wasn’t noticing the hot flushes as much and managing the pain better. My bone scans showed slight bone thinning so have taken Alendronic acid as well. I only did 5 years of Letrozole but  I think as the side effects subsided I worried they weren’t working and my body had got used to them. I have no boob, (not offered recon back then) very little hair (didn’t come back much after chemo) and deep wrinkles. This has aged me. I feel I must be grateful as I’m still here. It is hard to look in a mirror.I have looked at lots of research lately and discovered that a short break is possible and could help it work better. Too late for me now but I think I would have considered this. I can say after just two weeks off it I feel OK and that early morning stiffness has gone. I stuck with it as there was no one to tell you what is the right decision because no one really knows. It was Tamoxifen and all the gynae problems that I struggled with the most. I’m so glad I have finished with it all. Just lots of crossed fingers now. I feel your struggle and hope you find some answers that are right for you.  Get a second consultant opinion if you can. Sorry I’m no help. I hope you get the support you need. 

Chiara_BCN
Community Manager

Re: I want to stop letrozole

Hi mumgonemad,

I hope you had a lovely weekend. Hopefully someone will join the conversation soon, but if you would like to read more about other people's experiences with letrozole then there are some conversations happening on the hormone therapy board.

In this link, Rosie's story offers some tips for coping with letrozole.

If you want to talk through anything about your experience with letrozole, our breast care nurses are here to listen and support you - you can reach them on freephone 
0808 800 6000 or email them here.

Sending you hugs 💕

mumgonemad
Member

I want to stop letrozole

Hi all, I was diagnosed back in sep 2017 with breast cancer. Wasnt operated on till March 15th 2018 but my consultant started me on letrozole while she 'figured out a plan for surgery'

Anyway after my 1st breast op they sent an onco test off & I was told at the time that chemo wouldnt be of benefit  with the cancer I had ER positive.

I have been on letrozole for 3yrs & it is literally crippling me. What's the point of being alive with no quality of life?

3 years ago I was walking the dogs 2-4 miles daily & now I cant walk once around the local park without having to sit down.

I stopped taking the meds but OMG I had the shortest fuse I have ever had & was losing my rag over tiny things, also hot flushes.

I spoke to my BC nurse who gained some statistics from consultant which gave me only 7% increase of survival after 10yrs taking the medication BUT she then told me that I didnt have chemo because of the low onco test result but that figure was reliant on me taking letrozole. So I'm taking it that if I had surgery before starting the meds I would probably have had to have chemo which would have zapped anything left behind. My estrogen score was 8/8 & progesterone 7/8 so extremely high without letrozole but I have another 7yrs of taking this stuff & if I'm in pain now & have arthritis everywhere except my left hip I'm gona be bed bound by the end of the treatment.

I dont know what to do now they've told me abt the onco reliant on letrozole & I dont even know what my question is as no one can make the decision for me 😭😭