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Tamoxifen to Letrozole and side effects of medication

13 REPLIES 13

Re: Tamoxifen to Letrozole and side effects of medication

In theory my scan would of been discussed at the MDT meeting this afternoon. Sadly I won't hear anything until my appointment next week! Might email BCN on Monday and see if she can at least tell he if it's clear! That way I won't be panicking over nothing for 2 extra nights!! If it's not clear, at least I will be prpared! If that makes sense?

 

enjoy your time away 😃 xx

Re: Tamoxifen to Letrozole and side effects of medication

Hi, yes as you said the different brands can make a difference, I should have tried this first of all! however stopping taking the drug has made a small improvement, I definitely don't feel as down about it all. Don't feel as emotional anyhow. So far so good. Will wait another week or so before I know for definite!

Have you any update? Are you still waiting for your scan results? How has your week been? 

We are having a couple of days away this weekend, hope to relax and enjoy time out.

Take care X 

Re: Tamoxifen to Letrozole and side effects of medication

Hi,

 

In my first reply to you I did mention trying a different brand. With the Tamoxifen different brands really did vary in their side effects for me! Always worth a try 😉

Re: Tamoxifen to Letrozole and side effects of medication

Hi, what a week you've had too.... Don't you just hate all the tests/scans etc and the worry whilst awaiting the results, you would think we'd be used to it by now! Fingers crossed for you and do let me know how you get on.  I rang the breast care team and they have advised to stop taking the Letrozole for 2 weeks to see how I get on! Keeping a daily diary now until I speak to her again. In the meantime she will speak to the oncologist.

she did say that it my help if I use a different brand! I've heard this before have you? Certain brands give more side effects but I suppose we just accept what we are given from the pharmacy. She also said that as my hormones have crashed due to having the oopherectomy earlier this year the GP's suggestion of a small dose antidepressant is a good idea and many women find this helps get their life back together (small price to pay). So all in all I think this was good advice and feeling a bit happier now I've made some progress.

 

Christmas is nearly upon us so let us try to enjoy the festivities despite our health concerns, don't think we will stop worrying as they are ever going to go away completely so may as well learn to live with it a bit better! Thank you for your support, I really appreciate it. Great to talk to you. Please let me know how you get on with your oncologist and results.   bye for now xx

Re: Tamoxifen to Letrozole and side effects of medication

Hi, sorry to hear you're having a rough week, but sometimes I think it helps our GP's or other docs to see us at our lowest point! I remember right at the beginning of all this going in to appointments and playing the strong brave woman, who could deal with anything 😔 now I am more of a tell it how it is woman 😋 

 

As for reducing your hours, that sounds like a good plan, like you say just until you are more settled. Let's hope they find a drug that suits you better.

 

My week has been tough, CT scan wasn't fun as they couldn't get the cannula into a decent vein....my veins now disappear as soon as they see a needle! Not helped by the fact I can only have it in one arm. So he ended up using the vein on the inside of my wrist.....OUCH! Have a beautiful and painful bruise now!

 

Then to really top it off, I saw my BCN yesterday for a chat, and will have a 2 week wait for results, as my Oncologist only works one day and that's the day they have the MDT meeting in the afternoon. She said there was no point seeing him before it's been discussed at their meeting. Which makes sense, although if the scan was clear they would have nothing to discuss, so in theory they could call me and tell me! But I bet they don't.

 

anyway the speed the days seem to be going at the moment, the appointment will be here before I know it. Hoping for a nice early Christmas present of an "all clear" 😉

 

Let me know how you get on with work and how you're doing. Take care xxxxxx

Re: Tamoxifen to Letrozole and side effects of medication

Hi Nanny_Sal, thanks for getting back to me, yes the doc did actually listen and was quite concerned, probably due to me having a proper meltdown in front of her! It's been a bad week health wise and I just broke down! Thank goodness I made a list like you told me to do as I couldn't speak! I was having a particularly bad day and very emotional. She has said I am experiencing all the classic symptoms/side effects of Letrozole and advised me to ring the breast care team today, they may need to put me on something else! I am going to do just that. Next appt with doc in 2 weeks, she wanted to give me a small dose of anti-depressants to get me through this blip! We will discuss that further at next appt though. I told her how I had asked to reduce my working hours in order to cope with all these symptoms, her advice was to maybe ask for that on a temporary basis until my medication is under control, sounds like this might be a good idea, what do you think? 

How have you got on this week? Xx 

Re: Tamoxifen to Letrozole and side effects of medication

Hope your doctors appointment went well, and they actually listened to you xx

Re: Tamoxifen to Letrozole and side effects of medication

Sorry to hear that, every scan is another worry, I think you're right about how people are concerned whilst having treatment / tests etc but once that's done you are viewed as back to normal, how wrong are they. We are the foolish ones, if we were to take time off work our bodies may recover quicker, fatigue is another symptom that's not visible to others. It affects me quite often. Good luck with your scan and I will check in again next weekend to see how things are with you and update you on my doctors appt. have a good week.  bye for now xx 

Re: Tamoxifen to Letrozole and side effects of medication

It's always good to feel you aren't alone in how you are feeling. It's funny how during Chemo and Rads, people understand that you may feel rough and need some support. But once on the hormone stage, they assume everything is hunky dory....oh how I wish it was. 

 

I'm having a CT scan next week, my bone scan showed 2 'hotspots' on my breastbone, so after telling me they weren't overly concerned as it could just be where I've had a bump......weird place to bump?! They've now decided they need to make certain they aren't missing anything 😕 so feeling very fed up!

 

But reading your post has helped, because I was feeling that I was the only person struggling with fatigue and everything else. Although interestingly like you I also HATE taking time off sick, it just doesn't go with the job. I worked through Chemo, because I was too stubborn to admit that it was touch 😋 But maybe this is the payback, my body telling me it needs a break!! I have slowed down a lot, so hopefully that will help. 😄 

 

take ken card and let me know how your doc appt goes xxxxx

Re: Tamoxifen to Letrozole and side effects of medication

How strange that we have both felt the same, must be the concoction of tablets that is to blame,  everything is such an effort, I do feel better when at home as I can rest in between jobs, don't like feeling fatigued, need to sort it soon! Well so glad I haven't left my job....as you say its just how we are feeling and hopefully it is only temporary!  Will hang on in there for a while longer, problem with me is I won't ever take time off sick, would rather use my holidays to rest up. I know it's crazy but I would feel like I'd given in to the symptoms and side effects and they need to be workable, glad you understand how bad it can get because people I work with have no idea, unless it's happened to them of course. Thanks again for all your help, I feel better already just for sharing it. On another note, weight gain from Letrozole doesn't help, I must get back to the gym! X 

Re: Tamoxifen to Letrozole and side effects of medication

That is exactly how I felt! I started a new job a few months ago, but felt so rough that I was considering giving the job up, and heading home to my parents for a few months. To try and sort myself out. Thankfully I haven't. Good Luck with your appointment! Xx

Re: Tamoxifen to Letrozole and side effects of medication

Thanks for the advice Nanny_sal, I shall do just that, I've just made an appointment to see my GP, it is next Thursday so will prepare a list of symptoms / SE to take with me. I have felt so bad that I have seriously considered giving up my job to sort out my health! Not sure if this would be the right decision and I may regret it once I feel good again. Appreciate your help and will post the outcome on this forum so that it may help others too. X 

Re: Tamoxifen to Letrozole and side effects of medication

Hi, I am or I was taking Tamoxifen, and felt exactly how you are feeling now! I had constant niggling side effects that really got me down. To the point where I would burst into tears over the smallest thing. Probably not helped by the fact I couldn't sleep either!

 

So I saw GP and then spoke to BCN and finally Oncologist. It was agreed that I could take a break from Tamoxifen, so that we could work out, which side effects it was causing and what is 'old age' I'm 40!! But was feeling 90 most days. 

 

I'm not saying you should stop taking your Letrozole, but that it's worth talking with your GP or BCN and discuss the side effects. They may only sound minor, BUT when you are dealing with all of them, while trying to get back to a 'normal' life. It's tough! I ended up writing a list, and at that point they took me seriously. 

 

Also have you tried different brands? I know with Tamoxifen different brands affect people in different ways! Something to do with the binding of the drug!?

 

Good Luck with things, hope they improve for you 😉 xx

Tamoxifen to Letrozole and side effects of medication

Hello everyone, I have recently changed from taking tamoxifen for the last 2 years with few SE experienced to the said Letrozole, this due to having ovaries removed earlier this year (found large cyst) and as advised from BC Consultant. Am now classed as post menopausal (aged 54).  I had been warned letrozole may cause joint pain but I have leg pain from top to bottom, they sometimes go into spasms as well. Just had physio sessions for posterior tibial tendonitis, very painful foot, don't know if there is a link. The results of my bone scan (which is done as routine when prescribed Letrozole), was not great for my age and now prescribed Adcal. I also have under active thyroid which in itself causes SE such as tiredness. I take blood pressure tablets too and clonidine for hot flushes. I am due a yearly health check in January which could put my mind at rest once had blood checks etc.

 

I am posting this today as I feel rubbish and feel I should go to my GP but don't know where to start with explaining all these relatively 'small' symptoms I am experiencing. After all when you have had a lumpectomy, rads etc these SE are small things to cope with but they are seriously getting me down. I drive to work some mornings feeling so bad I end up crying! Should this be happening. Hoping to get some help from people experiencing similar symptoms and what they did to be able to carry on with the day to day routines.