Letrozole break

Ask our Nurses your questions
1

I’ve been on a 6 week break from Letrozole after 12 months of taking it. My breast care nurse advised taking a break after side effects became unbearable to confirm that it was the Letrozole causing them.

I spoke to her last week & confirmed that all the symptoms had either gone or improved enormously since stopping it. She has now arranged an appointment with my consultant surgeon to discuss my options going forward. My appointment is on 22nd May and I’d really like some advice on the questions I should ask so that I can make the best decision.

From my conversation with my nurse she seemed to think that I was so badly affected by Letrozole that I probably shouldn’t continue with it. As I’d also suffered adverse side effects on Tamoxifen with my 1st breast cancer 16 years ago, which led to me stopping that after 8 months, she didn’t think changing to a different hormone therapy would be any better.

I don’t know what other options are likely to be discussed and wanted to have an idea of what questions I should be asking at my appointment.

Thank you for any advice you can give.

2

Have you tried different brands? I’ve just been prescribed femara by my gp after 3 years of toleratin accord quite well then not being able to get it so having bad side effects from other brands….I’m better on femara than any of them

3

I did try a different brand of tamoxifen with my 1st 16 years ago, which made no difference. The issue is my body not tolerating oestrogen starvation, which is what all hormone therapies are designed to do, so swapping brands won’t help.

4

I couldn’t tolerate anastrozole, Letrozole or Tamoxifen. I am due to start Raloxifene ( Evista) soon. I put a query here and one response was quite positive.
Good luck!

5

Hi @ZiggyStar I fear that it is the removal of oestrogen that is causing the problems and that any endocrine treatment might be tricky for you, particularly if that is the viewpoint of the BC nurse. Did you go through your Predict score with your surgeon or oncologist? Even if you did previously, it might be worth going through it again with her/him to really consider the percentage differences between taking endocrine treatment and not and in particular over the 15 year period ( for example, my 15th year following diagnosis will see me at 81. I have a 70% chance of survival to that age according to Predict but I know I have a high % chance of developing dementia at that age (or before) too so I have no issue about being in the 30% because through personal experience I know I don’t want to live with dementia). It is a bit of a wet finger in the air on a personal level but it might help you to decide whether it’s worth it to keep experimenting with different AIs. Some women on here have reported faring better on Exemestane but it’s all so personal, it’s difficult to know if it will help. The specialists will probably keep faith with the NICE guidelines so it may come down to you having to take a decision. Do let us know how you got on.

6

Hi ZiggyStar,

Thank you for your post.

It sounds like having a six week break from letrozole has alleviated the symptoms you have been experiencing which is good to hear. As you are aware, with any medication the side effects vary from one individual to another and unfortunately you mentioned that 16 years ago you took tamoxifen and had side effects such that you came off the drug. It is reassuring to hear that you have an appointment with you consultant to discuss your options going forward and want to prepare yourself for this meeting.

You did not mention what side effects are you have been experiencing on letrozole, or when you were taking tamoxifen. You may find it helpful to write down the symptoms you have had so that your team can suggest ways to help you manage them if you decide to continue with the hormone therapies. You can also if there are any other alternatives, such as raloxifene, as @Vissdoc mentions.

Despite you using a different brand of tamoxifen 16 years ago which did not make a difference to your side effects, it’s still maybe worth considering if this is an option with the letrozole, as there are several manufacturers that make letrozole. As @cat15 using a different brand of medication can sometimes improve side effects.

If after exhausting all options, the side effects remain severe, some women make the decision (along with their oncologist) to discontinue the treatment Especially if the side effects are having a significant impact on quality of life. This can be a difficult decision to make, and your treatment team would discuss the risk and benefits with you.

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Best wishes

Helen

Breast Care Nurse

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