Hi all. Well, I had 3 x taxotere and a scan, to be told it wasn’t working because the tumours are still growing and I started letrozole 10 days ago.
Something seems to be havingan effect because I am having MASSIVE hot flushes, much worse than normal, but I have spent most of the last week lying down because I feel nauseous. I know nausea is a SE, but is it usually this bad?
Today I had a brainwave and found some anti-emetics left over from my last taxotere and have felt much better - actually able to get up and do stuff. Are anti-emetics the kind of medication that can be prescribed for daily use? Are the letrozole side effects likely to wear off?
Hi, I have experienced severe sweats and flushes with Letrozole but apart from first thing in the morning when I feel a bit nauseated (not sure if its not caused by the painkillers from night before) my main SE is joint pain and lethargy. My onc. is now changing me to Exemestane which hopefully will have less side effects. Sorry I don’t suppose this well help your SE but by bumping this back to the top maybe someone else will be able to advise.
Thanks, Laptalas! It transpires that I have been brewing up a urinary tract infection (due to the fact that I have a stent between my left kidney & bladder as one of my tumours was blocking the ureter) and have spent the last five days with a 39 degree temp and unable to keep even water -let alone pain meds & antiobiotics - down.
So I doubt I can blame the letrozole for the nausea I was extperiencing the previous week!
I’ll have to see what happens now I’m hopefully recovering.
Hi. I have been taking letrozole and am in my fifth week now. I am just starting treatment (diag July this year)and have also had goserelin injections, 2 so far. I am having hot flushes occassionally in the day time but mostly at night which are bad enough to wake me up. Some nights its a constant cycle of throwing the covers off and pulling them on again once the heat subsides. Anyway I dont think the letrozole is causing me any problematic side effects I think combined with the goserelin its supposed to give me a menopause hence the hot flushes.
I do have some additional aches and pains partcularly in my left arm but is that down to the tablets or the fact that I have a rotten cold at the moment.
The point is its difficult to tell when you are taking a whole cocktail of treatments whats doing what to you. And as you found out Steph you actually were suffering with a bad infection which I hope is now gone.
Anyway I have rambled on enough for my first posting. Just wanted to say I havent experienced any nausea with the letrozole so maybe once your infection is under control the sick feeling might go away. My concern with it is whether it will have any effect on shrinking my tumour. After 4 weeks there is no difference but then maybe I am too impatient and expect too much too soon.
I have posted this for new user Vi
Jo, Facilitator
Hi
I had breast cancer 3 years ago, had a lumpectomy, had radiotherapy and was taking tamoxifen, I gained 3 stone and was ill with sweats the side effects got so bad and I felt awful about myself, couldnt even look at myself and couldn’t get anyone to listen without telling me I just had to put up with it all, anyway I stopped taking the tamoxifen after 2 years and felt ok but worried about it. after five months my consultant found out I was not taking anything and he changed my medication from tamoxifen to Letrozole, I have been taking it for 7 months now and its bloody worse, in the last seven months I have had to go to hospital twice with suspected heart attacks, turned out they thought it was meds,a delayed reaction to radiotherapy, my breast looked bruised and purple,I have been diagnosed with fibromyalgia and my arthritis is a hundred times worse, I am in constant pain, I have nerve damage to my right breast and side since the op and even though I did all the exercises I still got lymphodeoma in my right arm which causes me problems, my right arm is almost useless. I want my life back! No-one really listens to me, they see so many people who don’t have problems after they assume I am just not being positive, but I am but being inso much pain exhausts me to the point where I have felt suicidal, don’t worry though I won’t do anything silly. I am thinking of stopping the Letrozole and taking my chances just to get my life back, take control again, I don’t like others being in control of my life! Oh yes and I had 6 breast infections in the first two years, the first was very painful and I complained to three different consultants and they didn’t say it was an infection, then I was in so much pain and crying, I saw my GP who knew little about Breast cancer but saw I was in a great deal of pain, I said I just wanted the pain to go away and told him I was suicidal, he asked the surgery nurse to have a look at my breast she had had more dealings with breast cancer, she said it was an infection immediately and I was given medication to clear it up. It just kept coming back though, meds gave me thrush every time, I have gone from happy smart and not looking my age to a bloody mess and now look 10 years older than I did. Thanks for letting me get all this off my chest!
Vi
I am sorry to hear that Vi. I’m afraid all I have to offer is sympathy but believe me, I do understand you because I’ve had CFS for at least 20 years and Tamoxifen is making it worse… to the point that I am wondering if it is worth taking…
I have now started with some alternative therapies to see if I can improve my energy levels or at least my sleep. I do not know if they are going to work but I’ll try. You have to keep trying.
I do not know where you live but there are ME groups in many places. Have you tried to contact one? At least you’d be among people who understand you. If you have not, this is the site: afme.org.uk/aboutus.asp
Click on “support groups, find one in your area”.
Getting things off your chest is good. I am sorry I have nothing else to offer! All the best.
I was diagnosed with Breast Cancer in July 2010 was put on Tamoxifen straight away then had a right mastectomy in August 2010. I had what I thought were the usual side effects from Tamoxifen, sweats, confusion, disturbed speach and weight gain. I decided in November 2010 to have a second mastectomy and double reconstruction which was done in June 2011. In September 2011 I had my remaining ovarie removed as I had a hysterectomy 6 years ago and I was left with one ovarie. After having my ovarie removed my Consultant put me on Letrozole. Since being on Letrozole my joints ache. In the morning I cannot bend my hands as my knuckles are so sore and I struggle to walk, my short term memory is also affected. My consultant has said he can put me back on Tamoxifen but there is a slightly higher risk of it returning. I have decided to put up with the side effects as I would rather have the side effects than not be here. I work through the pain by swimming, attending fitness classes and Ive just joined a walking group. To help with my memory I draw up to do lists and tick things off as Ive done them. I understand everyone is different but I hope this helps others with the same problems.
hi poppett
I have been on letrozole for 18 months with good results,so like you work my way through the se,s.My oncologist recommended glucocamine for the joint aches and I find it helps.I take one combined with omega 3.
Thanks Lucinda, Ive just started taking Adcal as my calcium levels are low due to me eating a low calcium diet. Ive thought about taking Cod Liver Oil caps, do you have any thoughts on that?x