Letrozole Side Effects

[sandylo]

i too have terrible pain at base of spine

[sandylo]

hi there i started on arimidex three years ago and was in total agony then put on exemerstane which was slightly better then six weeks ago put on letrozole i too have severe pain at the base of the spine im fine when sitting but a soon a i getup its terrible and keeps me awake at night i have another two years to go but have had no quality of life as cant walk far

[Guest user]

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.

[Doz1949]

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

[Guest user]

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

[wintersocks]

Hi GerryC,

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

[Guest user]

Hi winter socks,

i am staring an aromase inhibitor soon and also have osteopenia in my spine.already on zoladex.are you on any treatment for osteopenia?

[ponsmuir]

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!

[vercors]

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.

[ponsmuir]

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.

[Mejane]

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

[vercors]

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.

[Guest user]

Hi Puffywhiteclouds
Thanks very much for your comments, I will keep my fingers crossed and let you know how the hair growth goes.
Many thanks
Jan

[Mejane]

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

[Guest user]

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.

Best wishes to all.

[Guest user]

Hi All

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.

Thanks very much

[wintersocks]

mejane,
I have been on letrozole since September of last year. I have had very little joint pain, sometimes feeling a bit stiff when I have been resting too long and feel the same on waking. Once I am moving about it usually eases.
I have no hair thinning, no weight gain or loss. I already have osteopaenia and to have be monitored closely, for any developments towards osteoporosis.
My understanding is most women have no problems with this drug. In any event, most drugs have side effects, if you were to read throughly what might happen whilst taking Ibrufen, you would no doubt leave it on the supermarket shelf!
Please don't worry too much that it will be horrendous for you. Discuss it with your onc for reassurance.

[Lilac_Blue]

I stopped Letrozole after nearly 4 months. I could not take the SE of the deep joint pain and well, I felt just plain all around God awful. I had no node involvement, DCIS with two small tumors of IDC microinvasion. Had a 2nd onc consult on should I stay or should I go and both gave their blessing. Here are a couple of articles on Breastcancer.org the American site that you may find of interest:
Femara Better Than Tamoxifen for Certain Types of Breast Cancer
About 25% of Women Either Don’t Start or Don’t Finish Hormonal Therapy
Gentle hugs Mejane and you have my full support in whatever you decide.
LB, x

[Mejane]

I had a lumpectomy in late November, I have one more cycle of FEC 75 for adjuvant IDC, ER+ HER2+ no lymph node involvement. I am starting rads in about 6 weeks and probably hormone therapy at about the same time. But am v undecided what HR therapy regieme go for - Tamoxifen or Letrozole?

I have been reading this thread about the bad side effects that some of you are getting on Letrozole - 'unbearable muscle/joint pain etc. Sounds like a nightmare! this has really put me off going on it, even though my ONC has recommended it.
I have been offered Letrozole or Tamoxifen and am trying to decide which would be the best option For me. There is also the risk of Osteoporosis and Hair thinning on Letrozole, which I must admit has put me off it still further! With Tamoxifen, possible SE's are weight gain and hair loss and god knows what else! Having gone through the cold cap - so far with some success having kept most of my hair during chemo - the thought of 5 years of hormone replacement therapy, still with the potential ongoing apprehenson of hair loss really depresses me! Of course I know everyone is different and SE's may not apply in my case, so apologies for sounding a bit of a wimp! I'm one day post FEC 5 and generally feeling a bit low. 😞
I am going to talk through my concerns about SE's with my ONC, but just wondered if anyone who is a bit further down the line than I am could perhaps offer any thoughts or advice? Perhaps what your experiences were? Thanks So much. X

[Guest user]

Susan I am back from the hairdressers and feel much better just had my lunch regarding the hair washing my hairdresser has a back wash so that's not so bad I only have to sit and tilt my head backwards then the girl blows it for me its amazing what a treat can do to perk you up all the best to you all xxx

[ponsmuir]

Assisi - great that your mood has lifted. A visit to the hairdresser is a must but I need to see if I can cope with the hair wash in the salon. I'm also planning a manicure and a pedicure, but one thing at a time.
kitten mad - great you have no more discomfort. I am still stiff and sore, feeling generally under the weather physically most of the time. Family say I am doing loads more so that is reassuring. And the latest scan showed the Letrozole has reduced the breast tumour. So worth it, definitely.
Elinda - I was on Omaprozole but that was when I was taking 8 Paracetemols a day. I asked my GP about dosage and she thought 6 Paracetemols would be better. So I cut down and only take on a need-to basis, usually 2 a day mid morning to cover the most active time of day for me. I stopped the Omaprozole and seem to be fine.
Thanks for your helpful comments, Hazel Mary. I understand, like you, that there are other AI's available which is very encouraging.
Susan

[elinda45]

Kitten-mad - if you are taking ibuprofen or any anti inflammatory on a regular basis the omeprazole ( or something similar) works to prevent problems and you do need to take them every day not just when you feel you need them - the last thing you want is a big stomach problem on top of everything else. If you've stopped all ibuprofen and any other anti inflammatories then I'd speak to your GP about stopping them
Elindaxx

[Guest user]

Kitten I take one a day so far so good my mood has now passed and I am feeling much better thanks just going out to have my hair done on this lovely morning it makes you feel better going to the hairdresser don't you think keep up the good work girls you are all doing so well Hugs to you all

[kitten_mad]

Have now been off the tablets for a total of 5 TABLETS and have absolutely no back pain at all, so I am obviously convinced that it was caused by these tablets. It will be interesting to see what my surgeon puts me on to in 2 weeks time.
Hazelmary - thanks for your reply - asked GP about those tablets and she said they were for "acid" and gave me something else, problem is wants me to take them every night and quite frankly I don't need them on a daily basis.
Assisi - sorry to hear you are feeling a bit down - is that the only side effect you are experiencing?
KM x

[Guest user]

I have been given letrozole this week and its been ok but it is making me feel depressed anyone else had this effect from this drug?

[hazelmary]

Hello K M
I started on"Letrozole 4 years ago after 5 years of Tamoxifen and your symptons are practically the same as mine are now.
When I first started on Letrozole I was okay apart from the Burning Mouth Syndrome that started 6 months into the drug. My husband had been made redundant and I was still at work fulltime in an office and he took over the housework etc so I wasn't really doing much physical work as such.
He then took early retirement as he was 55 and I decided to take a break from work as I was getting tired and stressed in the job and he then got a pt job gardening so I stayed at home for 2 years. so apart from normal household things was okay. I was getting stiff at times and got the old muscle spasm but not too bad.
I then, and this is when it all happened, got a homehelp job with a charity working 15 hrs a week, housework, shopping etc and thats when it all started. Just doing the extra physical work along with the drug brought me a load of aches and pains, mainly in my back, hips etc.
My Onc sent me for a MRI scan which was clear and he at last said one was the main SEs with Letrozole is the aches and pains and is severe in 1 of 3 patients.
I am now on Ibruprofen, Omeprazole to counteract the stomach problems caused by Ibruprofen and a muscle relaxant and thats where we are. I have been signed off sick for 4 weeks and am now deciding whether to give up my job and find something less physical but I will probably wait until I have finished Letrozole next year.
The scan did show a change in bone marrow but that is expected in the length of time I have been on Letrozole.
I think that there are SEs with all AIs but there are others to chose from. I have been offered a change but as I have only a year to go I will try and manage.
Hope you get an answer soon.
Hazel

[kitten_mad]

Hi Everyone, I have been on Letrozole since end of October and apart from sore joints first thing in the morning I have been fine. I have been taking Cod Liver Oil, Glucosamine and Omega 3 every day to help with the sore fingers etc. and this seemed to help BUT the last 3 weeks I have had really bad back pain. Today I phoned my breastcare nurse in despair as I was in agony and painkillers were not really helping much. She spoke to my surgeon who said I have to come off of the Letrozole for a couple of weeks to see if that is the cause and if it is then I will get a change of tablet. and if it is just the same I will have to have a scan to check out the cause of the pain. The pain is in my lower back and worse on the left side, has anyone else experienced this? I keep fearing the worse and hope it is not bone mets, as I had the all clear on my yearly mammo last month. I'll keep you posted as to how this test goes but there is absolutely no way I continue with Letrozole for another 4.5 years if it is the cause, apart from anything else I would find it impossible to keep working. K M

[Alipalli]

Thanks for all your responses Ladies, I'll pass them to my wife twins evening. The vitamin D thing sounds interesting' I know she's taking calcium supplements and glucosamine and she goes to The Haven regularly where she has acupuncture which I know she finds helpful. Hazelmary that's great news and I am sure my wife will take fpgreat comfort from the knowledge that the pain is worth it in the long run, she does know that but I guess you all understand the emotional issues, the ups, the downs, far better than I do, but then I don't have to understand, I just have to try and help. Thanks to you all for resounding. Alipalli.

[hazelmary]

I had been on Letrozole for about 2 years when I decided to take a break from work which lasted 2 years!! Up till then the only thing that I had noticed with regards to aches and pains was that I was getting stiffer and stiffer as time went on but when I started a new job as a homehelp for a charity, completely different from any of my previous jobs, and where I was doing things like hoovering etc for at least a couple of hours a day I started to get real problems. At the moment I am off sick, I have just had a scan which was clear, I ache a lot, cannot move very far and on painkillers to help. I have decided that I will have to change jobs as it is obvious that a physical job isn't ideal although I have only one more year of Letrozole and that will be 5yrs Tamoxifen and 5 years Letrozole.
I think that a combination of the job and Letrozole have brought about my current problems although my Onc admitted that 1 in 3 patients are severely affected by aching joints etc whilst on Letrozole.
What I have done today is to buy some cod liver oil and glucosamine as it seems to have helped people so looking forward to seeing some improvement.
When I got my scan results on Wednesday I was so relieved and I am so glad that I had the Tamoxifen and Letrozole even though at times it has been unpleasant.
Regards
Hazel

[Hilly1]

Afternoon All,
I've been taking Letrozole for nearly 2 months after taking Tamoxifen since last July, I electced to have my ovaries removed in Jan which made me post menopausal, hence change to Letrozole in March (I'm 46)
The hot flushed seem to be worse with Letrozole, hopefully they will settle down as they weren't so bad with Tamoxifen. But the joint ache is much worse, does it get better or worse the longer we take the drug, I was hoping my body would get used to it. I am exercising more and doing Pilates (in an attempt to shed those chemo pounds) but am still hobbling around after sitting too long and 1st thing in the morning. My sympathies to your wife Alipalli.
Love to all.

[Guest user]

Hi Allipalli.
I started on Letrozole last August. I developed joint pain after about a month. Initially vitamin D supplements helped but I developed problems with both hips. X-rays showed high levels of inflammation which meant I had trouble walking upstairs. My oncologist changed my meds to exemestane (Aromasin) in January and I have only had minor aches since. It might be worth asking your oncologist if this could be an option for your wife. I have continued with cod liver oil and glucosamine supplements and also a general vitamin and mineral supplement which has ginseng to help with fatigue often found with these meds. This seems to be helping a lot . Best wishes to you both - hope the scan goes well. Buffy3 - I have acupuncture every fortnight to help with the flushes and general wellbeing and it really works. I sleep so well after a session. Love to all x

[Guest user]

Hi Allipalli,
Sorry your wife is getting alot of joint pains, I got those when starting with letrozole but when I was given calcium and vitamin D tablets the joints eased alot. (Anecdotal I know but the pains came back if I stopped them and went after I restarted) If nothing else works might be worth asking for blood test to check calcium & vit d levels.
Hope all goes well in the future
Regards

[Buffy3]

I am about to start letrozole this week so am interested to read about possible SE. My hospital offer acupuncture which can help with certain SE. Its worth asking your onc. I hope that they find something to help.
Kind regards,
Mel

[hazelmary]

Alipalli
I am very sorry to hear that your wife is having problems with Letrozole. I have been on it for 4 years and I too are having problems with it with regards to aches and pains and am seeking a way of reducing the discomfort. I am presently on Ibruprofen, which long term might not be an option. Ibruprofen is not good on the stomach so I take Omeprazole to help.
I am sure that you will get many replies to your post

Hazel

[Lucy_BCC]

Hi Alipalli and welcome to the BCC forums

In addition to the support and replies you will soon have here, please feel free to call our helpliners to talk through your queries, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

You and your wife may find the following link to more support service ideas from BCC useful:

http://www.breastcancercare.org.uk/breast-cancer-services

Take care

Lucy

[Alipalli]

My wife is in the 5 th month of letrozole as BC tumour reduction therapy and has been coping amazingly well with all the normal side effects but lately the joint pains have started to become almost intolerable. Unfortunately she also suffers from lupus which is also not great for joint pain. Have any of you wonderful ladies come across any medication or alternative therapy to help with the joint pain. She has a 3rd MRI coming up soon to check on tumour reduction and is hoping for wide area excision soon after. Help would really be appreciated by both of us. Alipalli, husband of Alibongo.