Hi All,
I have just finished chemo, EC x 3 and docetaxol x 3, due a double mastectomy at the end of Aug.
I started letrozol just under 2 weeks ago and since I have developed extremely swollen eyes, all fluid upper and lower eyes so much so that my eyes are nearly closed some mornings. Has anyone else experienced this? Im just not sure if it is the letrozole or lingering effects of decetaxol (finished in 3rd July)
x
Hi Kan
Yes I’ve experienced this recently, but did have an infection too which took ages to go. I think the letrozole makes your eyes more oily but I’m not sure if its treatable.
Let me know if there is anything you can do about it, as it does sometimes affect my vision in one eye during the day xx
Hiya sue
Welcome to the letrozole club …I’m sure its accumulative after time too but I’m prepared to put up with se as it’s doing a good job with my secondaries.
Yesterday I was in Primark talking to my sister in law and the sweat was running down my face literally …I looked like I had been taken out the freezer and was defrosting !!
If the symptoms are so bad …maybe mention it to your bcn …and try another hormone?
Hugs xxc
Hello Suze Anne
Phew …as you are going to be on letrozole for the long haul …you need to be comfy with the side effects …
You would need to check out water tablets with your doc as with liver probs …they might affect them. Hubby takes them for copd and they do help water retention. Natural things like lettuce and celery can help puffy feet and I find peppermint tea has the same effect !!
Don’t suffer though as you do need quality of life .
Xx
I take vitamin c daily ( fizzy ones ) and cod liver oil tablets …not sure but I do think that they both help.
I’m like you exercisec and walk daily i find that realky helps me. I taje it st night too and I’m a littke warm first thing in the morning but seem fine the rest of the day. ALos drinks lots of hit water and lemon through the day. Been taking it 2 months so far x
Hi girls…this is my first post.
Decided to take the plunge and join in the chat. I had a mastectomy of left breast in Jan 2015 no chemo or radiation. I’ve been on Letrazole for over 2.5 years to mop up oestrogen as the tiny cancerous bit they found in my breast after removed it…was HER positive. I was was told it was for 5 years… side effects are vile , pain in joints, exhaustion, low libido and mood, extreme fatigue, sleeplessness, itching skin, anxiety, thinning hair, horrible headaches and eye disturbances and stomach pain. I was a fit 60 year old when diagnosed. Since this drug I feel I’ve aged 30 years. My mum is 87 and is in less pain and distress than I am! However all said and done I felt I was getting on ok and dealing with the SE…( I do have a high pain threshold) This last two weeks have been MUCH worse and after reading some forums I am thinking it could be because I have been given the Cipla brand of Letrazole…last night I felt so poorly thought I might go to hostpital …in bed now for the day, which has been necessary on and off for the past two weeks. Today I am not taking the tablet and intend seeing GP Monday to get an appointment with a consultant. This really is a powerful toxic drug.and at just 2.5 mg…what is going on? I also have been told I must take a bone density building drug as have a bit of osteoporosis in my back…tried this too and got joint pain big time as a side effect of this one!..Hoping to get some answers in the next few weeks, meanwhile, keep chins up fellow sufferers and will post soon.
I
Hiya …if you have been taking Cipra brand …bin them they are terrible …I had them twice and felt horrible on them . I insist on Accord brand monthly now and they are more easy to tolerate but I think the side effects accumulate over the time …I have been nearly 2 years on them now but they are a powerful little pill …
Yes bone strengtheners also cause more bone pain …I have a monthly injection called denosumab …which can give me a real back ache for a few days each time but needs must .
Definitely speak to your oncologist / breast care nurse as there a few other options which might suit you better .
Xx
Hello judi
I collected mine Friday from boots chemist but I have my prescription marked “accord only”. Hope they don’t discontinue them …aagh.
I have heard that Dr reddy and teva are ok too as a option.
I think it’s cost as maybe accord are a little more expensive. .a lot of pharmacists buy in bulk at the best price so unless you have your prescription marked …they will fob u off with a cheaper option!
Hope you get it sorted …it’s miserable enough without all your extra side effects …
Xxx
Hi Ladies
I have been back on Letrozole for about 3 weeks now following a 12 week break due to SE’s, have found this time that by mid evening I get very very cold my hands and feet become like ice blocks, it’s like the chills when you have a bad infection, can’t stop shaking no matter how many clothes or covers I put on, this goes on for a couple of hours, didn’t have this before it was usual joint/muscle pain.
Has anyone else has experienced this and should I contact my Oncologist or BCN?
Best Wishes
Mary x
Hello Mary
Snap …I’m on letrozole and been feeling so cold too …have heating on etc. Normally in the summer I’m the Queen of flip flops …wear them March to October but this year have lived in sketchers type shoes. I also have been wearing socks to bed …even in summer. .what a wuss ?
In fact last night I was convinced I was starting a cold and took a lemsip at bedtime !! But nothing developed.
So you are not alone !! But it’s a good treatment so we must persist. .even if our heating bills go sky high.
Xx
Help - has anyone taking Femara/Letrozole got constant nausea? I have been on it for appr. one and half years, very little bone ache BUT the nausea is not getting better as time goes by but worse.
My oncologist, sadly, does not really want to know: all medications have side effects when asked to give me something. My quality of life is zero because the sight of food makes me sick.
Have tried ginger tea and travel bands, with no effect.
I would be most grateful. Or am I the only one???
Love to all
Elke
Although I posted in the thread that I’ve suffered no real side-effects from taking Letrozole (apart from gaining a few pounds-lost 11 during chemo!) I’ve just read on the US BC site that it can cause heart problems. I’m aware that it can raise cholesterol and since the article didn’t elaborate on the causes of the heart problems, am wondering if this is why? Has anyone else info’ experience of this? Not too happy if this is the case, as heart before this deemed very good ie when I had the US pre-chemo.
I can’t sleep at all since I started Letresole 4 months ago! I take Ambien but that’s not working now
Hi - I am new to this. I had a mastectomy in August and have been on Letrozole for about a month. I do get aches in my joints but the worst for me is being unable to wake up in the mornings. Then feeling so headachy and sluggish. Is this normal? I am 63 so past menopause. Any advice welcome.
ive been off letrozole for a couple of weeks now. sill feeling extremily tired and having memory problems going to go to see my GP next week to discuss. sometime having real bad swets in the night xx
Hi
i am finding that I get mottled skin and have a small reddened area on my (good) breast. I have been on Letrozole for just over the year and am getting appalling side effects. I’v Been referred back to the Breast Clinic tomorrow to get it checked but having had a recurrence on my bad side last year I am very worried.
Has anyone else experienced skin problems?
Anne
Hi
i am finding that I get mottled skin and have a small reddened area on my (good) breast. I have been on Letrozole for just over the year and am getting appalling side effects. I’ve been referred back to the Breast Clinic tomorrow to get it checked but having had a recurrence on my bad side last year I am very worried.
Has anyone else experienced skin problems?
Anne
Hi ladies i have been taking letrozole for 4 months and as I stated earlier the side dffects in he last few weeks have been horrendous and I couldn’t cope with the low mood. I dud a lot if research and asked my doctor to take me off Cipla and put me on Accord after my research on this forum. I know it’s early days and only been taking accord brand since Wednesday but already feel like I’m back to my old self, no joint paint, no sweats, no depression, appetite back so onwards and upwards at last fingers crossed. I’m also sleeping like a log again but doing stretching exercises before bed and sleeping with my feet raised on a cushion…peeeeerfect
Angel62 x
I think it’s about time the Cipra brand of letrozole was binned as we all have trouble with it …I felt terrible on it …I always have Accord brand too.
Xxx