I totally agree with you. It's not enough for some of us to just be technically alive. However I do respect the personal decisions of all. And wish all the best. I hope New and better medications are disvovered.
I took a break from letroxole for 2 months and it was wonderful. I tried exemestane for 1 week, the back pain and sweeping were not duable. I did go back on the let.. And the hip and groin pain came back. I've been on the let.. For 5 years. My Onc... Says they recommend 10 years now. I will do what I can. I know it won't be 10 years. I want the quality of life back.
Has anyone on Letrozole suffered from constant nausea, metallic taste and generally feeling awful.
Replies would be most appreciated.
I was diagnosed 2yrs ago with HR 8 ductile carcinoma, and went on Letrozole to shrink it because it was going into my pectoral muscle.. i had side effects at first, and they got quite mild, and stayed that way..I had a lumpectomy last October, then Radiotherapy January\February. Since then the bone pain has seriously kicked in, as well as all the other symptoms, and I don’t know if at 70 , I can put up with it all. Has anyone had the same experience as me?
Hi GrumpyTrout. Give the Anastrozole a try - you may get on OK. I've been on it for almost 3 years and tolerated it pretty well (I stick to the Teva brand) - my nails are OK and main side effects have been the hot flushes and mood swings. I'm due bone density scan this summer but my doc says they're running late! I've been taking cod liver oil for yonks so getting plenty of vit D which I think helps.
I have been on anastrozole for 3 years and my nails are flaky and brittle but I had a dexa scan last week and it was normal so try not to worry
Best wishes x
My history is similar to yours - diagnosed 3 years ago and taking Letrozole. I don't know if I have just been lucky but I have very few side effects. My joints ache sometimes, especially the knees and wrists but it is not severe and since I am nearly 70 it might be due to age rather than Letrozole. Also flaky and spliting fingernails. I have no idea what percentage of women have the really life changing and distressing symptoms that are mentioned on this site, but to anyone reading these comments I would like to say that not everyone experiences these horrible side effects and if you are undecided to give it a go as you might be one of the lucky ones who can tolerate it.
I've been on generic Letrozole for the last 2 years and am due to see Oncology about switching to Anastrazole because of male pattern baldness. I am waiting for blood test results to see if Letrozole has triggered an epigenetic response in my own genetic code - I have 4 brothers with male pattern baldness.
A bit concerned that Anastrazole may be more painful than Letrozole? I have found that I get least side effects with Dr Reddy's Letrozole; Accord version leaves me with a constant dry cough. I had my first go with Cipla this month and I never want to touch it again- feels like being coshed and the hot flushes are constant.
Hi Rory I am also seriously thinking I am not going to take anastrazole. I have been on tamoxifen for 4 years but have had to stop taking it. I have appointment tomorrow to discuss the alternatives. Unless she can convince me that there is a major benefit to me (which I don't think there is on the research I have done) then I will be declining. I think it is more important to look at your lifestyle and diet and I dont want to be left with arthritis or osteoporosis and have even read about women having to wear wigs because of severe hair loss. I know not everyone will get side effects and I may not get any but quite a few women do and. I am already living with lymphedema and now have enlarged uterus from tamoxifen it never seems to end. I suppose you have to balance it and in the end make the right decision for you x
Hi Rory I don't come on to the forum very often now but my story is diagnosed in 2014 lumpectomy/ chemo/radiotherapy/herceptin in 2015I started on letrozole and no word of a lie I wanted to flush them down the loo I started on the cipla brand went to see my gp who changed the brand to accord believe me brands do differ with side effects I couldn't believe the difference in how I felt my joints were as stiff as a poker before but I seem to be fine now the first six to nine months were worse for me I'm year three now since diagnosis and doing fine I can totally understand how you feel but I decided to continue as my breast cancer was hormone positive+++ so hormone therapy to decrease the oestrogen was the way forward for me hope this helps love Judi
Sheels, my tumour was a grade 2 invasive lobular carcinoma. I'm waiting on radiotherapy after recently having lumpectomy. I have to tell you that the thought of Letrozole terrifies me. I am even thinking of taking no anti oestrogen. I'm coming off HRT which I've been on for years-- part of the reason for going on it was bone density loss. I'm already aching with joint pain in knees, hips and back since halving HRT. The hair loss associated with Letrozole fills me with dread. Help anyone! Has anyone decided not to have any of these?
I have been taking Letrozole since June 2012. I tolerate it quite well, but sometimes the joint pain and low back pain are quite bad. I use painkillers and anti-inflammatories to ease the pain. I came off the Letrozole for a month in December 2014 for a month and then tried anastrazole. After 2 weeks on it I felt truly awful. I had bone pain in my legs and was so ill feeling I had to go to bed. My breast care nurse told me to stop taking the anastrozole immediately. She conulted the oncologist who said to go back on to Letrozole. I manage the side effects and am rarely inconvenienced by them. Next year I will be taken off Letrozole and I am apprehensive about the next drug. Probably Tamoxifen. Good luck!
I was so very bad on Letrozole I took them back to my oncologist and signed up for counselling , during the weeks I was on them I wept, I sweated night and day, I ached in every joint , and I was very angry with the world.
Now I am taking exemestane and so much better . Yes I've had a few sweats, and aches and stiffness but I already had MS and arthritis to deal with.
Wild horses couldn't get me back on Letrozole ..
Warmest wishes to all in our club xxx
Having been taking Tamoxifen fir the past three years a blood test has now confirmed that I'm post menopausal so they want to change me to Letrozole. Having heard about the side effects and my hot flushes are already horrendous I think I'm going to decline. My cancer was so small stage 1 and I was border line to have the Tamoxifen. I want to live my life not be unable to get around and be in pain....is this wrong?
I have been on Letrazole since February 2016. For the previous 3 years I was oral chemo (Capecitabine) for secondary breast cancer (spine, shoulders & ribs).
I had no problems with my fingernails with the chemo, but now I am experiencing a lot of problems - and I used to take such pride in my fingernails.
They split horizontally, are very soft, have white lines (could be caused by malnutrition) and every time they manage to grow, they start to split again. They are also deformed by ridges.
Has anybody experience these symtpoms and, if so, found a cure for this?
I have not consciously experienced any other adverse side-effects - not even the popular weight gain. In fact, I have lost a couple of kilos!
I was started on tamoxifen 4months ago and developed a large pulmonary embolism so was taken off it right away. Was started on blood thinners and can't take any anti-inflamatories whilst on them. Oncologist wants me to start on Letrazole but not keen. Going to discuss this with my breast care nurse on Wednesday but wonder if I should try it for a few months and see how I go.........not keen. My tumour was a grade 2 invasive lobular carcinoma for which I had a lumpectomy and radiotherapy. Any advice would be welcome. definitely gained weight with tamoxifen and lost 1.4 stone since stopping it, terrible flushes still bad.
Yes I'm just like you and I have stopped letrozole because the pain is so bad I'd be better off dead. If they try to force me to take them I shall just dispose of them. I am almost 73 and they propose for me to take them for five years. I should be nearly eighty! Think I will just enjoy my life as much as possible.
Yes I tended to suffer from back ache and was having to take Paracetmol all the time before taking letrozole . I started Letrozole about eight months ago and my pain has gradually become worse to the extent that is is unbearable. My right hip is the worst and it travels all the way down my leg. It feels as if my leg in on fire.
I spoke to my breast care nurse an said I didn't want to take it any more. I'll soon be 73 and am not prepared to spend the next five years suffering this amount of pain and she agreed with me.