Letrozole - aches and pains continue
Last year I was switched from Tamoxifen to Letrozole. At first I was feeling okay on the Letrozole but then I had a post menopausal heavy bleed (thats a whole other story), so had a medication holiday. When I resumed the Letrozole I started to ache and have body pains constantly, usually at night which resulted in ongoing fatigue. I saw my doctor who advised to stop taking the Letrozole - I was 4 years post breast cancer at this stage, so it was felt, as my initial prognosis was good, this would be okay. My issue is now, 6 weeks after ceasing the Letrozole, I still get the body aches and pains. It seems to be getting slightly worse. Does anyone have any experience of ceasing the meds and how long does it take to start feeling pain free?
Letrozole aches and pains
Hi everyone, I hope everyone is having a good day today :) I was put on Tamoxifin in March after my BC treatment, and then I found I had PALB2 so I had an oophorectomy and my Onc changed my meds to Letrozole now I have no ovaries. My sister in-law is a naturopath and kinesiologist and after all my chemo and radio she tested me and gave me a herb concoction to "clean up the mess". I told her what ever she gives me needs to be hormone free and compliment Letrozole, she has treated many cancer patients before and said all is ok. So, I was feeling ok, well, as ok as you can be for being put into chemical menopause, you know, hot flashes, a few aches and pains, brain fog.. hmmm maybe a bit more than a fog :) not great but I was managing, so my Onc says she isn't happy with me being on the herbs, she cannot know if they are still giving me hormones (or what ever it does) so she told me to stop, she said my body basically needs to go cold turkey on hormones and she needs to be sure nothing is effecting my medication. So, I went off them straight away and literally a week later....hoolie doolie I feel like I've been hit by a truck! My aches and pains in my back, legs, elbows, shoulder, neck are horrible, my legs have that tight tense feeling like they are just about to cramp...all the time! Sleeping is almost impossible, either waking up and staying awake or waking up and tossing and turning from my legs being so restless, and my ears constantly ringing all night. I wonder if those herbs were amazing and helping me through this or they were hindering the hormone therapy. I wish we had a way to find out. I really don't like feeling this way and the lack of sleep just effects everything else in my life and I just feel like I am complaining about my aches and pains all the time. I don't have another appointment with Onc for 12 months now, BC surgeon in 4 months. So my question is...does it get better? I am 3 months into a 7 year course. I am doing light exercise with light weights 4-5 times a week, eating pretty healthy, but I seriously feel like I can't stand, sit, lay, squat down, get back up...anything with it hurting like I have done a 3 hour intense workout and over done it and all I can think right now is that 7 years is a long long time!!! Any advice or feedback will be greatly appreciated, be it good or not so good :) Thanks for listening Sam
Hormone blockers
I have just completed radiotherapy and will start Letrozole in a few weeks. I am petrified having read the side effects experienced. I am in menopause and wonder if the impact will be less or if there are many who don’t have any side effects? Anyone with positive stories about Letrozole?
Oh God
Hi I'm Keryn, diagnosed is 2021 and I'm currently taking Letrezole. 2 1/2 years in & 2 1/2 to go. It makes me feel horrible. I'm currently taking CBD oil but read an article that said it interacts badly (my oncologist said he couldn't see any issue's) Does anyone else take it or ha e any info? Thanks, K
Letrozole and GERD
Was taking Letrozole for 13 months when I started getting severe pains around my breast bone (like an alien trying to burst out). I thought it was my heart. Medical oncologist felt it was the Letrozole interacting with my diagnosed GERD and told me to stop for a month then try Anastrozole. Over that month the pain slowly left leaving me very relieved to know I wasn't having a heart attack...lol Been on the new med for 10 days and so far so good. No side effects (touch wood). When I started Letrozole I had hot flushes, joint pain, headaches, immediately. They eased off to just very occasional hot flushes but an enormous weight gain (12kgs). Fingers crossed this new medication is much kinder to me.
Maybe try Starting AIs slowly 'over time' to see if the side effects aren't as savage?
I am now 71 and have been on AIs for 6 years, with varying side effects (specially on Letrozole when I first started.) I will completely stop taking them next year - but in the mean time, I am slowly 'weaning myself' off them just now .... (hehe, to be totally honest, I forget to take them most of the time! LOL) My theory is that if they started us off with one tablet a week for a month, then 2, then 3 (every other day), slowly getting up to 1 x daily - that the body should adjust to it better! I believe there could be merit in giving this a go. We really need to 'trial' this in a controlled way! MANY women stop taking them altogether (often without advising their Oncs) but then, if they get a recurrence, they'd have the 'What Ifs' and possibly never forgive themselves. It doesn't really matter WHICH AI you start off with - the body will still take a BIG HIT when you suddenly start taking them daily ..... (tho there ARE some lucky ladies who barely have ANY side effects ....) I was not one of them. I lasted 6 weeks on Letrozole, then lasted 6 months on Exemestane - and then went on to Anastrozole for the last 5 years which worked the best for me (with MUCH less aches & pains.) Yet others may START on Anastrozole & hate it as much as I hated Letrozole!! SO ....... IF you are having nasty side effects and it IS affecting your quality of life adversely - speak to your Onc about it. You DON'T have to put up with it, Have a break for a few months. Try a different one, like I did. It could make ALL THE DIFFERENCE. Also consider asking your Onc about Medicinal Cannabis Oil - I've been taking it for nearly 5 years now - and it HAS made a difference! There are many online Drs who will prescribe it, if your Onc won't. SO .... If you are about to start out on AIs any time soon - maybe mention 'starting them slowly' to your Onc ..... to see if your body tolerates them better, as in the long term, the longer you are on them, the better it is to reduce the chance of recurrence xx take care & best wishes
Changing from letrozole to tamoxifen
Hi team! I’ve been on letrozole for 2.5 years, and am noticing the aches and pains and vg atrophy more now, so my oncologist has prescribed tamoxifen. She says it’s safe to change but I’m still a bit nervous about it - will it be as effective in keeping the cancer away, and will I get more side effects …. Has anyone else made this transition and was it better for you? Cheers xxHives
Been on Letrozole for 9 months. A few side effects (weight gain, hot flushes, occasional diarhroea). But now I have hives on my Labia Majora. I've been using Aloe Vera which has stopped the actual itching. Any suggestions on dealing with hives? Because it's from medication I don't know if it can be cleared up.
Letrozole / Zoladex Side Effects Hitting Hard
Hi there, I'm day 9 of Letrozole, and week 2 of my second Zoladex injection. The joint pain has hit, but my biggest challenge is fluid retention, especially in my legs. Sitting and standing are really hard, I can't bend my legs more than 90 degrees. I've tried lying with my feet elevated but to no apparent benefit. (both drugs' eviQ notes have edema as a side effect) Given it's Good Friday and everyone in my medical team is uncontactable, any clues on what I can do to alleviate or relieve this? Taking 2 hourly meds for the joint pain (panadol then nurofen) but this has no discernible impact on the swelling. Meant to be flying to Perth tonight to see my father - but worried and thinking I should cancel. Any advice? KellyAngela Brodie - the story of the lady who 'invented' Aromatase Inhibitors!
Before Aromatase Inhibitors were made available to women to suppress oestrogen production that fed their Breast Cancer ..... the most common procedure for women with breast cancer was Radical Mastectomies. Angela Brodie was a giant in the world of breast-cancer therapy. She discovered and developed the first selective aromatase inhibitor — a drug that blocks the synthesis of oestrogen, which fuels the growth of breast-cancer cells. Such treatments have saved the lives of hundreds of thousands of women; a third generation of the compounds are now the drugs of choice in postmenopausal women. Angela was determined to change that - and change it, she did! An interesting read: https://www.nature.com/articles/548032a