Pausing letrozole for holiday?

Hi!
I’ve been on letrozole for 4 months, following mastectomy, removal of 3 lymph nodes (clear of cancer) for triple positive invasive lobular breast cancer in July last year, and had 5 sessions of adjutant radiotherapy.
However the letrozole is making me feel worse now than at any other point! Hot flushes with full face sweats (up to 20 in 24 hours), which I can cope with during the day, but they wake me up through the night and I get sleep in 1-2 hour blocks. My heart beats stronger during these episodes too. I am having other side effects, but it’s the lack of sleep that is a massive problem. I am also finding that I have dizziness and fatigue, which seems to hit for a couple of days if I have been busy.
I am currently evaluating a change in the time of day that I take the tablet, but it’s not much different. My BCN is monitoring me and we will in due course have a discussion about changing meds or another route (I don’t know what my % recurrence rates are).
But in the meantime, we are going away for a special holiday in 2 and a half weeks and I’m so worried that I’m going to continue to feel dreadful and the holiday will be ruined.
Can I stop taking letrozole for a couple of weeks before the holiday and then return to it afterwards?
Looking for some hope!!!

I am 59 and post-menopausal!

I so know what you mean! I had a tearful chat with my Husband about how rubbish I was feeling (on tamoxifen I am post menopausal 60 yrs old) and how worried I am about ruining the holiday - we go in 2 weeks too. I am trying to tell myself the holiday may help and I have thought about pausing the tablets but they take a while to get out your system and I am concerned I would have to start all over again with side effects so I think I am going to keep going. hoping my body gets used to them soon and the calf ache, fatigue and emotion start to diminish - here’s hoping! just wanted you to know I hear you xx

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Hello, I had the same diagnosis and treatment. Letrozole is making me feel dreadful too, the same symptoms as you and more. Every day I consider my quality of life and whether it is worth it given the minimal benefit it offers. I just wanted to say that when I discussed the side effects with the oncologist he said I could take a month off with no ill effect to test whether the lack of HRT was causing these simptoms anyway. I have not done that as yet. You should always check with your team but I think it is an option. However joyousjen makes a good point. It will take a while to get out of your system so you might need to stop it before your holiday - (you did say that). It is absolutely the worst of all the treatments in the regime. I am also 59, we have a lot in common!!!
I really hope you can enjoy your holiday. x

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Thank you @laneycass - it does seem we have a lot in common! I’ll keep you posted :slightly_smiling_face:

As everyone says - Please do check with your BCN or Oncologist.

My own experience was that I was on Exemestane and my oncologist swapped me to Tamoxifen because of what it was doing to me and as I was off flying long-haul I was told to have a couple of months break as she did not want me to fly whilst taking tamoxifen

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Hi

I was also told by oncologist that taking a break for a few weeks (up to a couple of months) was fine, to test if my AI Anastrozole was causing the side effects.

BUT as others have mentioned, in the same way that it takes a good while for the effect of AIs to build up (I wasn’t doing too badly for the first 5 months, but then the SEs ramped up), similarly it takes time for the oestrogen level to rise back up and thus for you to feel better. Eventually, after 10 months of taking the tablets, I packed them in entirely. I began to feel some improvement after 3 weeks, slowly, slowly, but I didn’t feel fully up to speed again until the 12-week mark. My hair still hasn’t thickened up yet, but I do know that takes around 6 months for new growth (with added oestrogen!) to come through.

So dropping the tablets is not a quick fix, although you might respond quicker than I did. I don’t think any of these reactions are exactly the same for any two people.

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Hi, I was also initially put on letrozole but had to stop as the side effects were so bad. Had a couple of weeks ‘holiday’ and then went onto tamoxifen. Once again side effects but eventually discovered I tolerated the brand Wockhardt better than alternatives. Whilst some will tell you it shouldn’t make any difference which brand it is, it’s the coating of the tablet which can do. Three years on when my oncologist told me he wants me to stay on it for the 10 years instead of 5, I certainly don’t have the worries I would have done. Hope this helps and you get to enjoy your special holiday! Xx

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Thank you @MistyK , it’s so helpful to hear the experience of others. Just to know that stopping is an option is good to know when discussing my options. :two_hearts:

Hi
I was on Letrozole pre chemo but found it awful and so did my hubbie who was on the receiving end of my moods

Post chemo my team switched me to Anastrozole and my sweating and dramatic mood swings stopped

I now have the occasional day of aches, fatgiue and neuropathy in my hands but for 4 more years i can stand this as every thing i can do to ensure my health is worth it

Pilates is also helping

Talk to your team and the nurses on here about your symptoms and options

Good luck and enjoy your holiday

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Thank you @Skomer. I’m sorry you’ve had a longer term prescribed, but pleased to hear that a different brand has helped. This is something I will definitely want to try. I may have left it too late for my holiday though :pleading_face:.
Thank you for posting :heart:

Thank you @Curlywurly1 . So good to hear that the switch in meds worked - onwards and upwards :heart:

I actually found that some of my joints pains started to improve as early as after 48 hours after stopping Anastrozole and there was an improvement in my energy levels as well. Xx

I take Letrozole at night now and it helped massively with insomnia x

Hi Mazzasmum

Thanks for your post.

As you’ve read from other replies, the symptoms you describe are common side effects of letrozole.

Hot flushes are the most frequently reported menopausal symptom due to hormone therapy and like you, many women contact us describing the difficulties they are experiencing with them. The frequency and severity of them vary from person to person. For most women they will fade over time and become less severe, but for some they may continue to experience hot flushes which can really affect their quality of life.

It sounds as if your breast care nurse is already aware of the side effects you’re experiencing. However, do let them know as soon as possible about the upcoming special holiday you’ve booked. It’s important you discuss your concerns that this holiday may be ruined due to the severity of your side effects.

As @laneycass, @willowherb , @Mistyk and Curleywurly1 have all said, it may be possible for you to take a short break from treatment to allow you to enjoy this holiday and to see if your side effects improve. However, it’s important to talk to your team about doing this. Some people find their symptoms settle quite quickly after stopping hormone therapy, but as @ Mistyk says everyone’s different and it isn’t possible to say how quickly this would happen for you.

If a short treatment break is agreed your treatment team may suggest arranging a follow-up appointment for when you’re back from holiday. You can then discuss whether there’s been any improvement in your symptoms, your individual risk of recurrence and the options to help support you continuing with treatment.

Some women do find changing the time of day they take their hormone therapy can sometimes improve their symptoms so it’s good to read you’re trying this at the moment. You can also read more information about other things which may help with hot flushes here.

As @Skomer and @Curlywurly1 say, sometimes your treatment team may suggest changing to a different drug and/or brand to see whether that improves your symptoms. You can also ask about a referral to a specialist menopause clinic where you can get further advice and information about coping with menopausal symptoms.

Experiencing fatigue (the feeling of tiredness or exhaustion) and an altered sleep pattern during hormone treatment for breast cancer is also very common. Other factors may also contribute to fatigue, such as: the emotional impact of a breast cancer diagnosis; reduced activity and poor diet.

There are things you can try to help manage fatigue as discussed in the previous links. You may want to keep a diary to record when you feel most tired. This can help you plan activities you enjoy in the times when you have more energy. This may help avoid the worsening of your symptoms, as you describe when you’re busier. Trying to stay physically active can help. Eating a healthy well balanced diet is also important. The following tips for better sleep may also be helpful.

Some people find talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

You can ring the Someone Like Me team on 0114 263 6490 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

You may also be interested in our Moving Forward resources that are for people who have had a diagnosis of primary breast cancer and have come to the end of their main hospital treatment within the last 2 years. They include our Moving Forward booklet and Moving Forward courses.

Through supportive, open conversations in a safe, confidential space, you’ll connect with people who understand. You’ll also find the tools you need to feel more empowered, confident and in control to begin to move forward with your life. You can attend Moving Forward either at our face-to-face course or take part by joining online. Find a course near you or register for an online course via the links above or call us on 03457 077 1893.

Do call the helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

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Best wishes

Heidi

Breast Care Nurse

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