Stopping letrozole

[julesab]

I was diagnosed in 2010 with breast cancer. Had mastectomy and lymph node removal. While being tested for chemo tumour found in lung and lobe removed. I then had chemo and radiotherapy and commenced on tamoxifen.

I then relocated and ? Advances in research and post menopausal was changed to letrozole. I wanted to stop this year but was advised next year. I am fighting to get teva brand and some member of a group said this will stop being issued in UK.

Most other brands give me bad side effects so I won't take them...

When stopping do you taper of...or just stop ?? And what happens to my hormones then 😳

I do confused and medical staff don't help...

Sorry for long drawl

[Jennymary]

Hi, I'm not able to advise about letrozole, but I've been on tamoxifen since the end of 2013 after having lumpectomies, I knew I'd be on them for at least 5 yrs, and as the end of the 5 yrs approached I decided I wanted to stay on them, but oncology would have no problem with me stopping them, I've recently had a tummy bug so haven't taken them for a few days and I've had no issues

[Bluemoon46]

I had to come off my Anastrozole before I started chemo. I just stopped with no problems. Why not as if you can switch to Anastrozole.

[RedCullin]

Hi, have you tried Accord brand? I've been on Letrozole for 3 years and eventually worked out this brand suited me the best with virtually no obvious side effects (but I know everyone's different)

[julesab in reply to RedCullin]

I didn't like accord can only take teva... Thank you for your reply

[Birthday2018 in reply to julesab]

I’m like that with Anastrozole only Teva. All other brands been given give me such bad joint pain and cannot do the simplest of things x

[Millea]

Hi julesab - I was diagnosed with oestrogen reactive breast cancer June 2018 and have completed surgery and chemo etc. I was initially put on letrozole for 5 years but found that I quickly developed crippling and severe joint pain. My oncologist advised that there were three different treatments available the most common one being letrozole. The other two are anastrozole and tamoxifen. Tamoxifen is usually given to pre menopausal women and the other two are better for women who are post menopausal. I have now switched to anastrozole (2 months now) and the side effects in my joints have definitely improved. You don’t specify what your side effect on letrozole are but maybe a switch to anastrozole via your oncologists advice might help?

The only thing I can say about stopping letrozole in one go is that when I was switching between letrozole and anastrozole my oncologist told me to stop letrozole immediately then wait 2 weeks and start on the anastrozole.

Hope some of this helps. All the best.

[julesab in reply to Millea]

Thank you. Side effects joint pain and brain fog

[Millea in reply to julesab]

Hi again. The joint pain is almost certainly from the letrozole so I would see if you can try anastrozole via your oncologist. I get brain fog too but I always put that down to the chemo as for me that’s when it started.

I also started taking glucosamine sulphate, calcium, D3 and collagen. All these help to support the bones and joints.

[julesab in reply to Millea]

I thought it was.chemo also but it's now 9 years since I had it..I am taking cod liver oil with multivitamins but cannot take calcium or D3 as I have sarcoidosis and that effects production of that...one thing after another. Thank you for your reply.. I only see breast cancer consultant annually and next one I am hoping to finish meds...

[galgo]

I was told 5yrs my friend was on for 10yrs it still came back

[julesab in reply to galgo]

Sad

[PerformancePoet in reply to galgo]

That’s sad. There just is no guarantees I’m learning. Which makes me question whether it’s worth putting up with the side effects. I might asked for anastrazole

[scarlet12]

There are no guarantees but AIs do a good job of reducing oestrogen levels which in turn refuces recurrence risk. I'm on letrozole and main side effect for me is stiffness.

[Lavendar19]

Hi I started with Anastrozol and am now on Lestrozole and felt aches and pain with both. I’m thinking to go back to Anastrozole because I got symptoms quick on L. I was told I could take Advil to help with aches since it’s mostly inflammation. I will being contacting my oncologist to discuss further. But they do say find the one that works best for your body, so you may have to try something else that gives the least amount of pain.

[bulldogbyrne in reply to Lavendar19]

Thank you I should finish next year so may hold on till then. Good luck with your journey

[Lavendar19 in reply to bulldogbyrne]

Thank you and cheers to good health!

[sandylo]

I have been on arimidex then exemerstane then letrozole for the last 6 years 10 years in all i was taken off them 3 days ago you dont have to be weaned off just stop taking them after 10 years. Im hoping my body will be less painful and itching all over stop and i can sleep at night. I dont think my trigger finger will go or the numbness in the night. Its been 10 years of hell since my op in 2010 but i hung on fearing the worse could come back. Just hoping now gor some relief.

[bulldogbyrne in reply to sandylo]

I had trigger thumb but physio sorted that and it's been ok since. I also have itching I wasent putting it down to letrozole though 🤔🤔

[sandylo]

My oncologist noticed on examination how much i had scratched id fetched blood it was that bad my gp gave me citirizine which does help. I tried all 3 of the als and to me there was hardly any difference i was in agony with all of them the arimidex was the worst. Im hoping now hes taken me off after 10 years i can get some relief and also not slept more than 3 hours a night all through been off 3 days and actually had 5 hours last night so fingers xd the joint pains will subside