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?
Potential liver issue
Triple positive Radiation and chemo AC and paclitaxol completed by March 2024 Lumpectomy Feb Early stage On letrozole, zoladex and finishing of my 17th cycle end November of Herceptin. Also taking 5mg of cholesterol tabs. Gp rwq blood to monitor the cholesterol tabs and if they working. Liver issue picked up. Oncologist req abdomen scan. Been feeling ok but for the last two days terrible nausea after eating. Headaches (which I never get) fatigue (which has also been ok) Has anyone been through something similar, what was the outcome? Look forward to hearing from you x
Total left mastectomy vs expander/implant?
Hi everyone - I’m newly diagnosed and have found BCN hugely helpful and reassuring. I have bilateral early cancers - invasive ductal (left side) and invasive lobular (right side). ER + PR + HER2 -.I believe ‘low grade, slow growing’. My treatment recommendation is: left side mastectomy, nipple/skin sparing with expander then later implant and right side lumpectomy. Followed by radiation and letrozole. Surgery scheduled for 22/11 at Chris O’Brien Lifehouse. The choice I have is left side total mastectomy or the reconstruction? For context, I’m middle aged, slim/small breasted and physically very active. Apart from the obvious surgery and post operative worries, my other concern is around the possibility of spending many months with ongoing breast related issues. Wondering if any of you have had a similar experience….and any thoughts/advice you might have? Thank you 🎀
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 wishesZoladex & Letrazole or Tamoxifen or Remove ovaries + Letrazole
Hi all :) Firstly, this forum is amazing and I am so grateful for it and all of you who take the time to share and respond. When you feel like no one else can relate it really just gives one comfort. Im 41, was HER2 positive, chemo & surgery done. Mid way through radiation. I have been on Zoladex from during chemo (8 months) Chemo side effects were minimal and it was effective, I perhaps did not notice side effects and was running on adrenaline or in survival mode. Now that, some time has passed I have noticed some side effects that are bothering me and want to get off Zoladex but chatting to my oncologist about it, her recommendation is to stay on zoladex Bone pain, fatigue, hot flushes, irritability, disturbed sleep, belly fat, weight gain :( are the side effects I have been experiencing. Not to mention the injection can be painful. I have to have herceptin for the next year every 3 weeks and zoladex every month for 5 plus year and the letrazole for minimum of 7-10 years. These are my protential options Zoladex & Letrazole Tamoxifen Remove ovaries + Letrazole I guess what I am looking for is to hear about your experiences or route you took and whether the symptoms subside or anything to manage them. Does eating better and exercise really help with the weight gain or is it inevitable? Look forward to hearing from you. Feeling overwhelmed today
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 xx