Letrozole and afterwards

Ethans - super interested in your post. Can you help me understand about “high quality letrozole”…… I’m about to start curious to know what to look out for 

Thankyou !

I had bilateral BC and was operated in Nov 23 and radiation for one week- started letrazole  in December 2023 - I had severe fatigue from radiation on both breasts simultaneously and then some radiating pain in both arms especially losing strength in finger grip - apparently it is a documented side effect - nausea too and not being able to sleep well in nights. Spoke to my oncologist who suggested I check my thyroid and Vitamin D - thyroid was fine vitamins was too low - so now on high dosage of vit D tablets - being vegetarian my B12 was borderline so surgeon suggested taking B12 supplements - endocrinologist suggested taking evening primrose oil tablets - been taking for 2 days and I feel a difference but too early to tell 

I was offered to stop letrazole and start another aromatase inhibitor - but want to see if I get better with these supplements 

speak to your doctors and explore options - but saying that it takes a good year or so for body to adjust to these medications 

I have been doing some weights too - kettlebell exercises which is helping with aches and pains 

Sending  love and prayers - hang in there and pesevere xx 

Hi Boobybabe2.

I'm in exactly the same position as you regarding treatment etc.  I’m also taking Letrozole for 5 years. I got the all clear last week. Two people (meaning well) said “that’s great it’s over - you can get ack to normal now” and my husband said, in front of several friends,  “at least you haven’t had to have chemo.” Both statements devastated me for some reason and I feel worse now than I’ve done throughout treatment. I feel very isolated now. I certainly don’t feel like “it’s over” and whilst I absolutely appreciate the serious effect chemo can have, I felt my experience was belittled. 

My friend told me to remember that the side effects of letrozole or whatever we are taking aren't just physical... We need to get used to these new emotional responses too.

If this has made you feel isolated just tell them how you feel... You know that they mean we'll but people don't seem to realise what we've been through and  are still going through.

People keep telling me I've been really positive and brave but I certainly don't feel it. It's the front Ive put on to help get me through to where I am now.

Take care and hope you get the love and support you want/need x

That rings a lot of bells with me, Ange66. It's good to know other people are going through summat similar. Not that I want any of us to go through it ! 

I have been on Letrozole about 6 months. At first I didn’t notice but now I have started to feel uptight, emotional at times, brain fog, a little angry and unable to cope with people. I never exoeeienced tge menopause apart from hot g dh lushes and wondee if this is similar. When people say there are different types of letrozol I dont know what to ask for? 
yes the support has dropped to zero. And I torally understand how you feel. I guess people cant keep up that level of support and are relieved that thet don't have to- thats why we come here to people who understand that its not over and that its always at the back of our minds. Take care of yourself and be kind to yourself; vitamin D, relaxation, speak to others in the same boat and push forward- you have achieved a lot already!! Am sure its the tablets and keep wondering if they are worth the small percentage that they stop cancer coming back…..hate feeling like this

Hi Leaps. Sorry you are having such a hard time with Letrozole. It was like that for me, too. I felt fine for six months and thought I would be one of the people who tolerate Letrozole. But then the muscle and joint pain started, and worse menopause symptoms than I'd had going through the real thing. And the brain fog !?!

My breast care nurse told me to stop taking Letrozole for two months, to see what happened.  After two months with no aromatase inhibitors I felt so much better. 

I was on the Accord brand. It just happened to be what my local pharmacist stocked. There are others: Cipla, Manx, Glenmark etc. I've only ever seen Accord - written in small letters on the front of the packet. 

I thought my breast care nurse might switch me to a different brand of Letrozole. It is known that people respond differently to different brands of the same drug. You probably know the active ingredient is the same, but different manufacturers add different things to the coating. 

But my BCN took me off Letrozole and put me on Exemestane instead. So far, so good. 

I do hope you find something which works for you. Definitely good to take care of yourself - something I'm not so good at. Wishing you all the best xx 

That made me feel so much better! Thank uou! Keep wondering if its the Letrazol or just me being grimpy and old. I forgot to mention that I completely stiffen up over night and look like an old womanof 90 when I get out of bed. Are you saying go back to the hospital? I mentioned it at my first appointment and the consultant replied ‘you've got nothing to complain about compaired to the last woman I just saw’. Kind of put me off and thought I would wait the 6 months until my next appointment…. maybe you have persuaded me to ask at the pharmacy or try again. I don’t like the woman I am so something needs to change  Thank you xx

Ooh, Leaps - definitely don't suffer another six months of this !  That would be crazy. 

I'm sorry your consultant was so unhelpful. Some people would change their consultant !

We are vulnerable people, emotionally and physically. We need help, not hindrance. The worst outcome of your consultant's attitude would be if you were to just stop taking aromatase inhibitors, without seeing if something can be done about them. 

The side effects can be horrible, but sometimes they can be improved, and these drugs are shown to reduce the chances of cancer returning. 

I'm lucky. All the medics I've seen have been very reassuring that no question or complaint is too small.

They've all said "Please don't suffer in silence. Tell us what's wrong, and we can usually do something to help." 

That was backed up by lovely former oncology nurses at my local Maggie's Centre, in Edinburgh. They said "All of you have been treated for cancer. All of you have had your lives turned upside down. All of you have had to put your plans on hold while you've spent time in hospital attending appointment after appointment. You've often felt worse after treatment than you did before you were diagnosed. It's not a natural way of living and it's exhausting, physically and emotionally." 

Can you talk to a breast care nurse ? She should be able to help. Mine was very kind. She didn't dismiss my complaint. She took it seriously and did something about it. 

You should not be feeling like a woman of 90. That is horrible and unnecessary. You are right: something has to change. 

It's probably best to talk to a breast care nurse. They can change things, and instruct your GP to change your prescription, which your pharmacist can then follow. 

Please let me know how you get on. Take care xx 

Hi. I’m so glad you are clear. My mum had 3 lumpectomies and then a mastectomy between November last year and March this year. We are obviously delighted she doesn’t need anymore cancer treatments for now but she is also on letrozole and feels she has some side affects from it, physically and mentally. She is also still experiencing pain, mainly nerve type pain which I assume is phantom pains but could also be scar tissue etc. she struggled with anxiety now too as feels she is supposed to get on with life again but the mental and emotional side of having had the disease is scary and she still feels lonely now she doesn’t have appointments for reassurance. I know you are supposed to be grateful and relieved when treatment has a good outcome but it’s still very scary xx