Hi I’m 3 months into taking letrazole and this weekend has been tough! some of the side effects I am experiencing are fairly debilitating.
The joint pains have increased so much so that ive been taking pain killers to help. I’m so stiff and feel 90.
The hot flushes and pain is getting to me as they keep me awake at night. I take a sleeper every 3rd night to get some sleep but I’m zonked the following day . Of course im assuming that these pains are drug related.
Would it be too soon to request a change of drug? Has any of you ladies done this?
Cheers
Hi Magda
I’m sorry you’re finding the side effects of Letrazole difficult. I wondered if you had read our factsheet which covers common side effects.
Here’s the link to the page where it can be either downloaded or ordered:
www2.breastcancercare.org.uk/publications/treatment-side-effects/letrozole-femara-bcc64
I’m sure others will be along soon with offers of support.
Best wishes.
Louise
Facilitator
I’ve been told the se s often settle after three months… Hope yours do - sound awful Jane
Hi
I’ve been on Letrazole for three years. The first few weeks I felt dreadful and thought ‘I can’t do this’. It settled down a bit over the next few months although I did have the pains in my feet and hands.
After approx 6 months it disappeared and I’ve had no side effects since.
I still pop the pill every morning and I’m convinced it’s why I’m still OK.
Before BC I never, but never, took any tablets. Not even an aspirin. I still don’t like taking anything but if it keeps me here with my loved ones, then so be it.
Mal
Hi Magda, I too was on Letrozole ,taken away whilst on Chemotherapy.It will be reintroduced in 3 wks time.when I first used Letrozole the joint pains were incredible,heard of a supplement called DIM (concentrated broccoli)rang BCC and was told no contraindications,This supplement is quite expensive but for me it worked and quite quickly,most of the joint pains disappeared.bought mine from Agestop uk.there is now a Super Brocolli on sale at M&S in the vegetable aisle.(((HUGS)))Mavisxx
Ps.had brocolli and cabbage at most meals!!!
Thank you all for support and sharing. Ii feel better to know that this will pass as its been getting more severe and I thought that when the chemo and rads finished I would start to feel better but that hasn’t happened… Same but diff!!i will def try DIM SIvam I am already taking broccoli daily as well as beet root carrots apples and other stuff juiced. Haven’t seen it in M&S yet but I will ask tomorrow.
Maybe I expected too much too soon…
Me too, on Letrozole for about 9 months now, stiff and painful joints the whole time, am trying acupuncture now but its not making any significant difference yet but I’m still hopeful.
But have to say after reading the Lancet study which says having this kind of side effect is linked to lower rates of recurrence, then I think I’d be more worried if I wasn’t getting these side effects. Makes it a bit more bearable, to me anyway.
I’ll give the brocolli thing some thought, as I’ve already upped my spinach intake in the hope of counteracting the few glasses of wine I have occasionally!!
S
Hi, I’ve recently been prescribed letrozole following a recurrence but have only just taken my first one this evening-what joys to which to look forward!
naz
hi
I have been taking letrozole for 18 months.The main side effects have been hot sweats,nausea and tiredness.I have aches and pains but never sure which are related to drugs,arthritis and getting older.
I have always taken my pill at night as I have trouble sleeping and as tiredness is one of my se’s it seems to work better.At my last scans my tumours had shrunk and are now possibly operable,so I pleased i have managed to overcome se,s and get a good outcome.
Hope the aches and pains ease up for you.
Lucinda xx
I am stiff and sore when I get up after sitting for a while but am ok once I get going. I have been taking Letrozole for 10 months and the sweats have eased a lot recently. Has anyone put on weight since starting or am I just kidding myself that my increase in girth is due to that little pill rather than eating too much?
Hello Yamslass
I have been on Letrozole for 2 1/2 years after 5 years of Tamoxifen. Put on 2 stone during treatment and whilst on Tamoxifen.
Since coming off Tamoxifen I have lost the 2 stone I put on but I was in a job I disliked which I gave up in Feb this year and been at home ever since and they do say that stress will put on weight and I was stressed most of the time.
My problems have been with my mouth and I am now under an Oral Consultant and have been diagnosed with Burning Mouth Syndrome, no one will admit that it is a side effect of Letrozole but I have no other side effects.
There was another lady who had lost weight whilst on Letrozole but I think mine is due to not being on Tamoxifen.
I notice that I am stiff only if I don’t exercise most days, if I have “a sitting infront of the telly” day then I do have problems getting up.
Hazel
I’ve only been on Letrazole for a few months, and feel like an old lady when I’ve been still for a while, but OK when I get going. I take it in the morning, cause the sweats are easier during the day. They’re settling down now though, and…, I’m losing weight… (drum roll please!) Not a vast amount, but I HAVE cut down the size of my portions, and it’s reducing slowly…Still having the odd glass of wine and biscuit, so I’m not depriving myself… Brocolli tablets - there’s a thought! Jane
I started Letrazole on 31st of May this year- I sit down aged 63 and when I get up I’m 93!! As Lucinda says I’m not sure if it’s the aging process, the arthritis or side effects of Letrazole. I’m onto box 6 out of the 65 that I will have to take- countdown in progress.
Thanks for the tip on broccoli Mavis will give it a go.
I can definitely say that it’s the drugs s/es and not getting older as the change has been to quick and it’s not a coincidence.
If its not side effects then it can only be the dreaded …
To think that in January 2011 I was fit and healthy but this treatment is brutal and in 20 yrs time people will say how inhumane this all was! But I feel I have little choice at present.
The cancer has spread to my bones and im now waiting to see if it has gone to my eyes.
Why is there not more effort put into research why more and more of us are getting this disease and alternative options of treatment and I don’t mean alternative therapies?
Magda
Hi Magda. I was on Exemestane and the joint aches and pains were horrendous, so I was changed to Letrozole. Still had aches and pains, but not as debilitating.
I’ve got this theory in my head, that if I’ve got S/E’s, then the drugs are working. An old wives tale I know, but it helps me to believe in my treatment.
After about 10 months the S/E’s really started to settle down, and guess what - went for a scan and meds not working, got new tumours in my ribs and ones in liver have grown. Am now giving Faslodes a go.
Yamslass - I told everyone my weight gain was due to medication, but in the end I joined Weight Watchers on line as I was so depressed about it all and the weight gradually came off slowly. Am now back to my pre AI weight.
Love to you all, joints an all xxxxx
Hi Jane do hope these drugs work for you and I guess I have to weigh up pros and cons and of course taking the letrazole is what I must do yet every time I pop one I can’t help but look at it negatively .
The change in lifestyle gets to me but unlike you girls that are annoyed about weight gain I’ve managed to put some weight back on and I’m not complaining I lost nearly two stones over chemo etc.
Lucky for me I don’t have the mouth problems that’s a bonus!
Super duper broccoli on the list!!!
Quote:
That might have been me: I lost 2 stone on letrozole within a year, but I was taking it after a diagnosis of bone mets, and this was excess weight which - I think - had increased my bc risk (I’m postmenopausal).
Ironically I’m now on capecitabine, which is chemo but has relatively few side effects… and my weight has been slowly creeping up… only a few pounds though.
I too have been prescribed Letrazole, I took it for 2 months with terrible side effects, all joints stiff and chest pains, ulcers in mouth, and major hair loss which was troubling me the most the 3rd prescription I got was a different brand, even more server side effects started with blurred vision. I have battled with myself and my family as to if it is worth taking the medication, do I want quality of life or quantity of life. I am high risk of reaccurrance but even knowing that I’m battling with myself do I take it do I take the risk of not taking it. I have spoken to the oncologist who said if I take it, it increase the chance of no reaccurence by 3-4% are the side effects worth it.I must confess that I have not taken medication for the past few weeks, I have lost wieght I feel almost human, the painful joints have eased. I’m I stupid I really don’t know. I’m battling with myself daily what do I do. I thought I’d deceided till I read all your posts today.
Fighting a battle in my head
Carole x-x-x
Hi Everyone
I have taken Letrozole for a year and five months. I too suffer from joint pain and stiff joints. I was at the doctor last week and was given tablets to take when I feel that the joint pain is severe.
Like you oatcake I think is it worth taking the tablets when I feel like this. I am also high risk of reaccurance if I don’t take it.
I have decided that I will keep going on as having a small percentage of it not coming back is better than nothing.
I think it is a very personal decision to make, and only the person taking it at the time can make that decision.
Hope this helps oatcake.
Love Anne
Thanks Anne for you reply, I have decieded to speak to my GP later today, I really am torn. I had made my decision not to take it then on reading the recent posts I’m not sure the decision I made is the right one.
Carole