I have just joined the forum and have read all of your comments about letrozole. I have been lucky with not having any joint pain however my problem is with my hair. I finished my chemo at the end of October and had a mastectomy on 2 January and was put on letrozole the beginning of February (can’t have tamoxifen as I developed a blood clot in my arm after the chemo finished). When I visited my oncologist this week he was surprised at how little my hair had grown, the back and sides have a covering but the top is patchy. Has anyone had this problem? The oncologist did say that he would talk to a dermotologist but I was wondering if anyone has had this problem and can offer any advice about what I could do. I have a wig but with the summer (hopefully) coming didn’t want to be wearing it. I have started to go out without anything on my head which is quite liberating but am worried about the top of my head getting burnt.
Hi Elliottjan
When the hair on my head grew back after chemo it did so more quickly around the sides and at the back and I was similarly concerned (I thought I looked like a bloke!). However, I need not have worried as the hair on the top did catch up a few weeks later and I soon had an even covering. Hope it works out similar for you very soon.
Hi Mejane
Don’t forget that you will read all about unpleasant side-effects on forums such this one. The thousands of women who tolerate hormone therapy with minimal side-effects probably won’t be posting about that. I have been on Letrozole for several years now and have had minimal joint pain, easily manageable and have never had to resort to painkillers. Neither have I experienced hair loss or weight changes on Letrozole. As you say, good idea to chat through your concerns with your oncologist and then you can make an informed decision on the best way forward for you.
Hi, Puffywhiteclouds
Thanks for your positive feedback on Lexrosole! Good to hear this - thanks. I will talk everything through with my ONC in a week or so. I’ve still got one more chemo to go and rads then tablets for 5 years. Best wishes to you - and to everyone else on this journey we would all rather not be on! XXX
I am another lucky one, with no side effects from letrozole. A bit of joint aches, but nothing unbearable. Prior to letrozole, I had 4 years of tamoxifen. Which was tough to start with and then got easier. Good luck everyone.
Has anyone experienced hair thinning or hair loss while on Letrozole? I will be starting rads in about 3/4 weeks then Horomne tablets. My ONC has suggested Letrozole, although Tamoxofin has also been discussed. I have been reading about SE’s of both and whilst I know they may not apply to me, it would be really helpful to know what others a bit ahead of me have experienced.
I am also concerned about the potential for weight gain on Tamoxofin and the potential for increased risk of Osteoparosis on Letrozole (my mother and her sisters have it) so am dithering about which drug to go for. I am aware each of these drugs are from a different group of ER inhibitors and have researched both on the MacMillan site, but the a possible SE’s do worry me. I have put on about half a stone on chemo and the thought of putting on any more weight over the 5 years I have to take these tablets is worrying me.
Can anyone offer any pearls of wisdom? If you are a bit further down the line than I am I would really appreciate any advice you have with regard to the SE’s you may be experiencing on either of these drugs. Many thanks. MJx
Mejane
i find I have a small amount of hair loss with Letrozole but you wouldn’t notice from my head of hair. It’s just when I brush my hair, more comes away than before. I have lost weight with Letrozole as my appetite has reduced considerably and at times I feel slightly nauseous.
My main SE’s are stiffness and sore bones which seem less now after 4 months. But Letrozole is proving effective at the moment and Paracetemol helps relieve these SE’s.
I would find it difficult to choose a drug even after researching it on the Internet - SE’s vary so much and the Onc has seen so many more cases/has access to research results etc. He can also switch treatment if you find it difficult to tolerate a certain drug.
Hi Mejane,
I haven’t been suffering form hairloss with letrozole. I did put on 7 kilos on Tamoxifen that I managed to shift since I have been on Letrozole. Unlike Ponsmuir, I did not lose my appetite, I had to be careful. Still a few that needs to go but that is another story.
My onc had told me that I should forget about weight loss while on Tamoxifen, so I may have used this excuse to eat more…
As Ponsmuir said, I would rather that my onc tells me what to take, rather than having to chose based on side effects. Tamoxifen only worked for 3 years for me, hence me switching to Letrozole.
Mejane and Vercors,
in the scheme of things, weight gain or loss is the least of our problems I think. Over Christmas /New Year I was on very strong steroids to combat the spinal cord compression and I had an enormous appetite for fatty and junk food. Totally out of character but I had to give in. Now the gained weight is falling away.
maybe another treatment in future will make me swing in another direction. Bit as long as things are becoming more stable for me, I shall out up with it. And rejoice in trousers with elasticated waistbands.
at the moment I crave protein, lean meat and fish. A friend with a medical background tells me that my spine is remineralising with the Zometa treatment and my body needs this kind of food. What a roller coaster!
I have posted a reply to you once but it has disapperared!
Here goes again.
The treatment I am on is: Vit D and calcium combined. This is through my GP as recommended by my surgeon.
I had a DEXA scan last year and am to have another next year (and every 2 years following that)
my surgeon strongly recommended exercise, particularly weight bearing.
Do you have pain from the oeteopenia? mine is described as ‘marginal’.
WS
Hi Everyone. I am looking to see if anyone can give me any advice re side effects of Letrozole. I have been taking it for 3 weeks now and have terrible itchy crawling skin which is driving me mad. I do not take any other medication so can only put it down to Letrozole.
thanks x
Hi girls and Mr
i,ve been on Letrozole 2 and a half yrs, no hair loss just a bit dry, a dry mouth a bit of weight gain around the middle too many hot flushes for comfort and yes lots of aches and pains I only notice it for a few mins when I get up… From bed or chair, I,m a Nurse so very little sitting down on a 12 hr shift I think we all get a few unpleasant side effects from what I call my poison (Letrozole) but in the greater scheme of things I do think its doing its job and for that I am thankful but… Not always grateful!
I wish you all well with your treatments it’s not a pleasant journey but we are still around to moan about it and I often do
Best wishes to everyone xx
Hi all, I used to be on Arimidex, but the side effects were dreadful, really affected my quality of life. Since I now have secondaries I have been started on Letrozole - been on them for 18 months. There has been some weight gain, some hair loss - on the crown and front of hairline, and aches and pains. I also have quite itchy skin and high cholesterol l (not caused by diet, and up til now normal) But nothing as bad as on Arimidex. I take glucosamine and a Dvit/calcium supplement as well as having 4 weekly denosumab injections. In the scheme of things the Letrozole is holding my secondaries at bay for the moment, so I think I will have to stick with them.
Good luck to all of you . Hope you can all find a way of controlling the unpleasant side effects.
Has anyone experienced breast pain whilst on Letrozole? I’ve suddenly developed breast pain in one breast and not my affected breast. A bit worrying really.
I have been on all three arimidex emerstane and letrozole for last three years and have had in all six years of total agony I only go out if I have to usually food shopping as I live on my own and couldn’t be without my car it’s now my legs all my joints are full of pain 24/7 and letrozole caused trigger finger which doesn’t bother me but the pains are horrific I was hoping originally to be on them for five years and was counting the days down but now it’s ten years Ive a very strong pain threshold bur cant stand much more
Hi I’ve been on letrozole from April ,I was on HRT for the menaporse plus anti depression tablets and beterblockers for migraine I’ve stop taking HRT , I’m 52 but feel 90, my body feels like I’ve been hit by a bus , all my joints hurt fingers swell ankles ache back ache hot flushes feel tiered all the time can’t sleep at night now have really bad pains in my neck hurts to turn my head to the side very stiff and feel like my bones are cracking as well as vertigo witch it had before but it’s a lot worse now I could go on and on just wondering if this is what everyone else feels
