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Switching from faslodex to letrazole

Due to NHS funding regulations I've been switched from faslodex to letrazole and just finished my fist week. I'm usually quite an upbeat person, my glass is always half full (I apologise as I know it can be irritating) but it takes a lot to get me down. But since I've started taking the letrazole I've really struggled this week. My joint pains which had gone are back and painful and I feel really low but in a weird artificial way. I'm even wondering if I can cope with going into work - which is just not me. I haven't had to take any sick leave since diagnosis.

I appreciate it's been Christmas with all the work it brings, I've been coughing since 15th November after having 2 colds in quick succession, I've had to swap oncologist and hospital and my lovely dog almost died Christmas week after contracting hemorrhaging gastroenteritis. She recovered thankfully after 2 nights at the vets on a drip but you should have seen my kitchen that may take longer to recover!

I just wanted to ask if any of you have experienced low moods while being on letrazole and did it lift? Or should I just put it down to getting over tired with Christmas?

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Hi Julie,

I take Letrozole too, and it can cause low moods. When one of the oncology nurses sat me down and went over possible side effects, mood swings was one of them. I found that it quickly went away, so I hope that it will be the same for you too.

Do you exercise much? I work out three times a week, walk a lot and try to stay active. Epsom salts can also provide relief from aching joints. I add them to my bath and relax for half an hour or so each day. You might want to also look into complementary therapy. I found out about it through the Macmillan centre at my hospital. Cancer patients can have complementary therapy sessions for free at the nearby hospice (I thought it was just for end of life care, but it's not). I have been going every month since September.

I'm sorry to hear about your colds, changing oncologist and your dog's health issues. You have had a lot of upheaval lately.

I hope you feel better soon,

Sophie ❤

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Thank you, I wasn’t warned about this and that’s reassuring. It’s such a weird low mood - it feels so artificial as though my normal self is just being sat on by it.

I am very active, I don’t get to the gym very often but I do a lot of walking and i’m skiving off work this afternoon to go swimming :-) I will try the Epsom salts - I have some in the bathroom 😊 thanks ❤️

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Hi Julie,

It's worrying when something comes up that you have not been expecting, and were not warned about. I was given leaflets about the possible side effects from my treatment and I was also told in person that Letrozole can cause mood swings. I suppose it replicates the menopause, as I have heard some women have mood swings during that phase of their lives.

Ooh, you naughty girl, skiving off work!! I went swimming in June, not long after I had started treatment and it was not the right time for me. I should have waited until things had settled down, rather than expecting my body to just bounce right back as before.

The Epsom salts are great. I had a funny experience just before I started using them. I called my oncology nurse helpline and asked if it was safe to use them and I was asked if I was constipated. I thought that was an odd question. When I said no, I was told I shouldn't take them. It turns out the nurse thought I was going to ingest the salts, not add them to my bath! So now I try to be more explicit when I am asking for advice. I can't just assume people know what I am talking about!

Sophie x

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Oh Sophie thank you, you have just made me laugh out loud.

Well I did skive off this afternoon,, I have a wonderful boss! I spent the afternoon in a spa with a good friend. Friends really are the best medicine :-)

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I'm glad you had a good time at the spa with a friend, Julie. I agree that friends are good medicine. Enjoy your weekend!

Sophie ❤

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Hey Julie, I haven’t noticed low mood on letrozole (like you I try to be a glass half full kinda gal), but I completely get the joint pains. I find it difficult to move in the morning time and even after driving the car, it takes some time for the ankles to loosen up. Sometimes I have to walk on my heels for a few minutes before the ankles “unlock”. I’m glad your dog is on the mend.

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Yes, i’m the same, walking across the bedroom floor first thing is quite a challenge 😊

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Hi julie

I’ve been on letrazole for about 8 months..I have joint pain and very low moods..I cried at my last two appointments with my oncologist..cried having my bloods scan done..not like me at all..I’m a tough girl

My oncologist has suggested seeing a psychotherapist or medication..as I’d rather not go down the antidepressant path I’m going to see a therapist ...I personally think it’s the combo of the letrazole plus the fear of the disease

Anyway she was talking about a change of meds last time as my markers are creeping up..although I prefer not to change..maybe come off the letrazole which would be interesting to see if these horrid symptoms disappear

Barb xx

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I've also been feeling tearful this week which really isn't me. More worryingly, I've also gone off pudding! I didn't have any of this with Faslodex.

I think it's really useful to talk things through with someone who is independent. You can say things that you can't say to friends or relatives.

Juliexx

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Hi julie

I’m very independent and private and hate the thought of giving in and seeing a therapist but I can’t continue like this for much longer..some days I feel like I could just stay in bed!!.. I don’t though!!! I’m off to the stables shortly for a ride out with my daughter and friend then we’re going out for lunch..don’t worry we’ll get changed first so we’re not scruffy and smelling of horses..were very good at transforming ourselves!

All the best to you

Barb xx

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After my diagnosis I saw a counsellor at the Haven. Not because I was struggling or felt low but as a preventative measure. I wanted to be able to get my head straight before I started to struggle.

The therapist specialised in breast cancer patients and I knew I could say the unspeakable to her because she had been trained to deal with it. I knew I couldn't upset her. She made me realise that I was a lot stronger than I thought and I did have the strength to cope with all this, and she found a couple of issues I needed to address which I hadn't realised I was carrying.

Even if you aren't feeling low I would recommend speaking to a good therapist just in the same way as you would get a flu shot. And if you don't like the therapist don't be afraid to find someone else - just like your hairdresser (or dentist 😊) you need to find the person who suits you

Juliexx

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Hi julie

I have an appointment on Tuesday so I’ll see how I get on

I think maybe talking to a stranger will help as I don’t want to upset my girls and my husband doesn’t get it or is in denial not sure which but I hate this person I’ve become

I was fine this morning..had a ride out and lunch with my daughter (sneaky glass of wine as well) went to a farm shop and bought my horse a new saddle pad..so far so good then just in tears for no reason

Going to the cinema in a bit to take my mind off it all

Thanks for your kind response..means a lot

Barb xx

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Ps, I think it's time I took my own advice :-)

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Letrozole made me very achy and very low and fatigued in a weird way too. But I also think you are experiencing the result of holiday stress and the stress over your dogs illness. It all adds up. You need time to just relax and catch your breath!

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It has been a very stressful couple of months, Catching my breath is what I need :-)

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Hi Julie. You certainly have had a lot going on over the last little while and in the midst of it Christmas and the rest of the holidays so I'm tired just reading about what you have been struggling with.

I'm on Ibrance/Letrozole as well, cycle 8 for me and I will agree it definitely makes joints achy and causes mood swings. I have never been an emotional person but certainly for the first number of months post diagnosis I couldn't stop crying and that was definitely not me. The constant crying and feeling of doom I'm sure was part meds but also the extreme shock one feels with this diagnosis. I now feel better most days, of course I have those days when I am feeling down but that's normal I think but the ladies here have been a godsend to get me over those low periods and let me know that I'm not crazy just a part of this new 'normal'.

I am so glad your dog is doing better and I hope if you can find some quiet time to give yourself some much needed R & R time you will feel better too. Take care.

Sandra

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Thanks Sandra :-) I am usually irritatingly up beat which is why I'm wondering if the change in meds underlies the low mood. I really recognise the feeling of doom, I have that too.

You are right about the ladies on this site being a godsend!

Julie

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I was switched from letrozole to faslodex a few months ago. I didn't notice any change in my mood swings on letrozole (I've been dealing with them pre-letrozole, although I'm fairly stable on an antidepressant), but definitely joint discomfort and pain. I have no bad discomfort on faslodex (just a sore arse due to less than stellar injections). It is hard to tell if the emotional side effects are caused by drugs or this d@mn diagnosis. When I drink green drinks I feel better. You do have to pace yourself on these meds, and definitely over exertion and being fatigued makes it all worse. Hope you get to recoup and feel better.

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Until swapping to letrazole I've been fine (as far as you can be) with the diagnosis. I cried for a month because I couldn't bear the thought of leaving my kids , and then decided it would be a long time before I did that.

In a funny way I've always expected to have this (there is a lot of cancer in my family) so when it was diagnosed I was annoyed because I thought it would be in my late 50s not late 40s but also relieved that it had been found. A weird response I know, but why I'm struggling to understand this low mood. I might try some green drinks and I definitely need to review my diet. Thank you for sharing your thoughts, I do tend to over do it and you are right I do need to be more careful with my energy expenditure 🙂

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Anything to boost your immune system will help. I don’t wonder that your mood is low, I am amazed at the grace and energy you have to deal with this and raise young children. When I was first diagnosed, almost 5 years ago, my onc told me about a patient with young children who wanted to live long enough to raise them. She did, and she now travels all over with her husband. That’s pre Ibrance and many other newer drugs. Find what comforts you and uplifts you (reading travel and Buddhism for me) and do pace yourself and accept help from anyone who offers. When your energy or mood are low, listen to that and get help to take care of yourself.

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Thank you 🙂 though my kids aren't young, they are 20 and 22 but in my head they are still children, and both still live at home.

Back in the 90s my aunts and uncles had so little time and their treatment was pretty brutal, things have come on so far since then. I've been out walking today with my camera, but I still have this artificial flat feeling which just isn't me. Hoping it will lift soon 🙂

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I have kids the same age and they all need their mother no matter what age. I feel in the dumps as well occasionally and what I do is re read all the success stories here and there are a lot. I then choose to turn it around as I believe that cancer hates positivity. Doesn’t mean I don’t think of negative things. But I try to get through it quickly once I anayse what I am feeling. There is no break. I have had 5 funerals to attend since diagnosis not all cancer and every time I talk to someone they tell me a cancer story. Keep in mind they don’t know about me so they carry on. Any show I watch whether deal or no deal or say yes to the dress, there is a cancer story. So I am being tested big time. So feel it because you have the right to feel what you are feeling and try to let it go as soo. As possible. Our kids need us and we want to be here for graduations and jobs and weddings and grandchildren. Reach out here if you need anything.

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Thank you 😊

What is wrong with people? I have had exactly the same, as soon as someone hears you have cancer they have a horror story to tell you and they smile as they do, I even had one from the oncologist's registrar when I went for a check up! I have learnt to spot the signs and change the topic before they get going.

I am usually positive, I believe the same that cancer can't cope with positivity which is why I'm struggling because this low mood just isn't me.

I can't bear the thought of not being there for my kids so I made the decision that I will be 😊

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Excellent choice. And when you feel down, let us know. We will get you back up there .

🤗

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So I hear a lot of cancer stories because I work with seniors. They don't know I have cancer. In fact, few people do because I felt that not having many people know means when we see each other we dont need to talk about cancer and I feel "normal" for a moment. When I am exposed to the bad cancer stories I remind myself that we are all different. Because something didnt work for one person doesn't mean it wont work for me. Maybe other people have some other issues too which complicated things for them. Try not to get down by bad stories. We are all unique.

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I agree about the green drinks. I just recently started back on them and whether it's coincidence or not I feel like I have more energy. Maybe it's all in my mind but at the least the added nutrients are good for me.

Sandra

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My husband who has no major health issues also says he feels better. Can’t just be in all of our heads!

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Cope with and be thankful for the side effects of letrazole because lf that stops working and you ever have to go on chemo it gets a lot worse.

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Thank you for your kind response.

I am very well aware of what will happen without these drugs and I wasn't complaining just asking for advice on other women's experience with this drug. I lost 3 aunts to breast cancer and 2 uncles to prostate cancer in the 1990s and they all died within 2 years of primary diagnosis. I am very thankful for advances in treatment. I have already experienced intavenous chemotherapy. It had to be stopped after 4 sessions as it was unsafe for me to continue.

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I didn’t mean for it to sound harsh I use my phone so I try to keep my responses short. I’m on chemo now and the side effects are sometimes almost unbearable.

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Intravenous chemo is tough and some days it is hard to keep putting one foot in front of the other - I completely understand. I kept going by just looking forward to the good days or even hours. But as you said we have to be thankful that there is treatment available.

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by any chance, are you also taking crestor or lipitor?

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No just, ibrance, letrazole and danusumab and paracetamol for pain. Are those statins? My husband takes them but my colestrol is just within the acceptable range.

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Reason I have asked is that they give you a tremendous amount of joint and bone pain

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ah, I see, thanks for thinking of that

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Also, exercise supposedly helps the discomfort from this drug. As its winter, at least here, that does not make it easy!! I am a brisk walker and have not done it for weeks with Christmas rush etc. I have to get back to it as I feel much better when I walk my two miles daily

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I am active and wear a Fitbit. Most days I manage 4 miles. The joint pain is far worse when i’m inactive, sitting on the sofa makes me seize up but I went hill walking on Saturday and accidently did 8 miles up and down steep inclines which didn’t bother my knees at all. 10 minutes in front of the tv and I can hardly move.

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I am sorry about your relatives that passed away from cancer. Treatments have come along way since the 90's and continue to improve.

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Hi Julie,

After the holidays I always get a little down. Post holiday blues.... Wow, all those changes would throw anyone off. No one sat me down and explained the side effects. I keep wondering why no one calls to see how Im doing on these meds they prescribe. I have a friend who takes Claritin sp? every morning with Letrozole, she said it stops the pain.

I have felt pretty down lately but this is a new dx for me after 7 years. I usually can hold it together but lately I have been feeling really sad and emotional. I recently made an appointment with a therapist.

I'm glad your beloved pet is feeling better. I hope your feeling better soon. xoxo

Robin

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Yes I find Christmas quite stressful. Ever since my husband threw a roast potato across the Christmas dinner table at my parents house because mum hadn't used goose fat to cook them, my parents come to us and I do all the cooking. I also do most of the shopping, preparation and all the cleaning.

I really recommend seeing a therapist/counsellor (see my reply to Barbteeth) an I think perhaps I should take my own advice.

Meg is back to her normal sulky teenager self, someone needs to tell her that she's a Labrador and is supposed to be enthusiastic :-)

Julie

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Julie!

Thank you for that laugh! Im afraid i would have laughed if that happened at my house. You never know what to expect here. "still smiling" :)

I used to host the holidays every year and love doing it but last year was enough. I did everything myself and was exhausted. No one got up to help except my sister. This year everyone was on their own. My one Niece had Taco Bell, the other one worked and my sister stayed home. We ended up going to my SIL which was very quiet and peaceful. I think it will be a new tradition.

How old is Meg? I have a 7lb Maltipoo who is 13 and thinks he is 2.

Robin

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Thankfully my parents go with the flow :-)

Christmas is a big event in our family but I quite like the idea of them all shifting for themselves. I've had 3 exhausting christmases. 2016 I had only just finished chemo and radiotherapy, 2017 I had a broken vertebrae which was a result of bone mets but I didn't yet know, and then this year.

Meg is a 7 year old chocolate Labrador with the air of a used car sales man. She is not a typical Lab but when I'm not well she and my older dog,Tess, are my shadows. I don't know what I'd do without them 🙂 What is a Maltipoo? We considered getting a labradoodle but decided that as a breed they were too intelligent for this household 😊

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That does sound exhausting. This was my worst. I had a Plurax drain put in on Christmas Eve morning at 6am. I didn't anticipate it being so painful. At least I didn't have to cook. It was enough to get dressed and get to my SIL's house.

I hope 2019 is a great year for all of us :) He is a Maltese and Poodle mix, all 7 lbs of him.

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I don’t experience mood swings on Letrozole and Ibrance....so just sayin. It’s good to hear from people who share your experience, but I hope it’s a passing thing, wrapped up with the holidays and colds and all, and not necessarily a side effect!

Have a healthier new year!

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Thanks :-)

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Hi Julie, wow! You did have a rough time. That alone would make you feel down. But I agree these meds affect us all differently. I was on letrozole two yrs ago, I was down but blamed it on my diagnosis maybe it was the meds. I had a bad reaction in August to Afinitor, so now I am on Faslodex and xgeva only. I will start IV chemo next Thursday. But my whole family cannot believe I have cancer since I had so much energy over the holiday. Relatives I have not seen in a long time said I looked so good. I would comment that is because I am not on another cancer drug. I felt like my old self. It is the meds that makes us sick. I am normally tired, have diarrhea, feel nauseous and it it is all from the meds. I have no pain and my back will hurt if I stay busy for a long time. Now I know I will be sick after Thursday so I am cleaning, washing etc. Getting ready to be laid up. That is so sad. My mood is not always great. I really try some days to be kind, it is not so easy.

I hope you feel better soon. Maybe as things calm down it will get better.

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I was absolutely fine on faslodex, this last week I have been suffering from nausea, fatigue and painful joints as well as a flat mood. I'm hoping it goes once I get used to the change. I just wanted to see if anyone had noticed the same.

It sounds as though you are fighting fit going into chemo. When I had mine I felt better when I kept active, nothing major just pottering around the house. Light housework made me feel better than sitting :-) Hope it all goes well for you :-)

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Istarted on letrozole and experienced very dark depressive episodes some time into the treatment (I was on it for 3 years). My oncologist eventually gave me a light antidepressant which helped almost right away. I have been put back on letrozole temporarily till I see my oncologist next week and started to take half an antidep tablet within a fortnight. For me I obviously seem to react to it that was as well as the terribly heavy sweating from my head and the general arthralgia in ankles. Still - it has to be kinder than IV chemo!

Maybe you will have to chat to your oncologist about depression.

Good luck

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Thanks for that :-) I'm hoping that I get back to myself once I get used to the meds, but I will talk to the oncologist about how I'm feeling.

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Hello Julie

At the beginning of this medication I felt rather down too and, a bit empty headed or vague. I too had joint pains, which the oncologist told me was proof that the drug was working. I have now been on the drug for nearly 18 months and thankfully it does not bother me too much. I hopw that you will soon feel better

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Thank you for that reassurance. I’ve actually been sent home from work today because I was struggling so much to concentrate this morning. I was struggling to hold a conversation as the thoughts just kept escaping.

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I'm glad I'm not the only one. For the first few months on these drugs I found myself forgetting words when I was talking to someone and that certainly wasn't normal for me. 'Vague' was a good word to describe it. Thankfully that has seemed to disappear with continued treatment. I'm sure if I wasn't dealing with MBC I would have been worried it was Alzheimer's.

I certainly have a lot of joint pain so I hope your oncologist is right about the drugs working. Thanks for sharing.

Sandra

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So sorry that letrozole is causing such difficulties. i found Tai Chi excercises very relaxing and therapeutic, Classes were provided by Macmillan occuptaional therapists

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I'm going to look into Tai Chi. Thanks for the suggestion.

Sandra

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I’ll have a look into that, thanks :-)

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Hi there. I have been taking letrozole for 4 steady months now. It gets to me ..makes me very hot and and sweaty ..worst at nite ..my inside feel like the jitters from my legs to my and gut and my arms ..i hate that very weird feeling . . nervous feeling . maybe its a combo off Chemo pill. Ibrance and letrozile . i havetold my Dr but he dont say much ..side effects. 4 months now. On both now 4 months and they have kind off eased off a wee bit . .hope it will get better .

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Hi Veronica. Those night sweats are awful I agree. Honestly at night in my house is almost like a comedy show. When I first get into bed my hands and feet especially are very cold so I snuggle up to hubby whose body is always like a furnace. Then of course after about 5 minutes I'm so hot I have to turn away and move to my side of the bed where I have a tower fan going all the time. Eventually I cover back up and then fall asleep. Then I wake up and throw the covers off again because I am sweating and then the fan because I'm sweating makes me freezing again and on and on it goes. (Abbott and Costello would have done this well...lol). I digress...sorry.

I don't experience the jittery feeling that you do and I'm sorry for you and it must be awful. I am glad that things are easing off a bit. We know these drugs are playing havoc with our bodies but if we want to have a fighting chance at this beast we need them. Please take care.

Sandra

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I find having ice cold water cools me off when I get those flashes. It is like putting a fire out!

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Yes, I feel anxious and panicky with a sense of impending doom. I’m now convinced it’s the letrazole and just hoping it will subside as my body gets used to it. Thanks 🙂

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