Exhausted-Letrozole and Ribociclib - does it get easier?

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  • Hi, I am 2 1/2 weeks into my first cycle of Letrozole and Ribociclib with Denosumab injections. I am absolutely exhausted.  Will this tiredness ease as my body gets used to the drugs? Need to go back to work at some point, but no way I could the way I am currently feeling. Anyone further down this treatment route who can give me some good news! Thanks  
  • Hi MicMcC

    I am on the same treatment and found the first cycle really hard going. It has got much better for me with each cycle, I am just on my 4th cycle and although still feel a bit tired I can lead a pretty normal life. 

    Good luck Hope you start to feel better soon 

  • Hi Martello, thank you, that is good news. Hope your treatment keeps working.  Happy New Year!

  • I started my 16 th cycle last Thursday, Ribociclib Letrozole and Denasumab.  The first 2 were difficult….no taste, tired and low neutrophils.  Then my Ribociclib dose was reduced and I’m now on 200mg…..life is so much better….just get a bit tired in the afternoons but I am 75.  My oncologist is in touch before every cycle asking how I’m doing so yours should be contacting you.  The only change in my life these past 18 months is I’ve not holidayed abroad.  It will get better for you and become routine….i was really down for a while but now I have days when I forget I have metatastic breast cancer.

  • Hi, good to hear you are doing so well. I wish I had days where I forgot about it. But its pretty much all I can think of. I cry when I think of everything I'll miss- Growing old with my husband,  seeing my kids grow and have families of their own, retiring etc . I'm trying to stay positive,  but it breaks my heart that I'll have to leave my amazing family. I'm hoping once I'm further into my treatment my emotions will be less erratic, cause at the moment I can cry at the drop of a hat! Less than 2.months since my diagnosis, so I'm still trying to get my head round the whole thing.  Fingers crossed it will get easier. X

  • My heart goes out to you younger women with young children and work commitments.  I remember those weeks shortly after diagnosis…..it was a dark place and that’s where you are now but it will get better.  I remember looking at my lovely husband one day as he was loading the dishwasher and I was suddenly overwhelmed with an image of him doing it when I wasn’t here…. that feeling comes occasionally but mostly I’m feeling positive.  

    You’ll get into a routine of having your blood taken, then the hospital to collect your meds and get the Denasumab injection.  I now feel, as others have said, that I have a chronic illness that is treatable and these treatments are keeping it under control. 

    I wish you the very best of luck.

  • Thanks Scouselass. The dishwasher comment made me cry.   But I will try and adopt your mind set of living with a chronic illness rather than dying from one. That's first box of Ribociclib done,  curious to see if I feel any better/ less exhausted the week I'm off it. (Bloods and ecg last week were ok)  Also think the Letrozole is definitely causing my moods to be all over the place.  But fingers crossed my body will adjust to the "new normal" soon.  

    Thanks again,and hope 2024 is a good one for you and yours. X

  • Hi folks

    I am at the start of all of this. I just went to my first appointment yesterday and was told I will be on Letrozole, Ribociclib and Denosumab. Ive been given some leaflets but they don't explain much and I've no idea what to expect. Are these a type of chemotherapy or is that something else. I am at the beginning on that sharp learning curve and had a doc who just did the minimum and rushed me out the door before I could ask any of the questions I had prepared.

    I am also crying a lot. I don't have family around me as my husband left me during my mum's final days and my dad died last year. I haven't told my kids yet. Its tough thinking about all the things that I won't be able to do but also tough doing this on m own.

  • Hi Thea

    Letrozole is for ER+ cancer (hormone), Ribociclib is a type of chemo and Denusomab is to strengthen your bones. It’s a very common combination,  There is detailed info on all medications on here which will help you.  Hopefully you will have minimum side effects.

    You need to talk to family and friends for support.  Also look into counselling and see if you can find some Peer Support or Someone Like Me. I have just joined a group for Secondary Breast Cancer patients - check the Breast Cancer Now website which meets monthly.  It really makes a difference talking with people going through similar.

    Hope this helps a bit.

    K

  • Thank you K.

    It helps to be able to understand what these meds are. It seems like a stupid question but its basic stuff that helps me to navigate this new world. And yes I hope they help with little side effects. I am so tired at the moment I doubt it will make much difference! But maybe that's naive.

    I am struggling with knowing how to talk to family and friends. I was in shock at first and decided not to say anything as it was so close to Christmas and it seemed the wrong time to dump it on folks. I told my big brother as he has been close to em while we've been sorting out the family home and all the paperwork after losing our dad. He took it really badly as I am all the close family he has got. I decided not to tell the kids and don't know even where to start there.

    How did you tell your family?

    I also told my 2 close friends and am puzzled by how they are reacting - almost as if I've got the cold and it will be ok. And they've backed off. Is that normal? Its right now that I need them and even for practical things. I just asked of they could help me with lifts from the garage as I needed to leave my car for its service and can't do my usual 3 mile walk back and forth as my leg is in so much pain. they made excuses. I felt so let down and hurt and don't know what to do with that. I never ask for help but always help them and wasn't expecting that reaction.

    Are the places you mention 'someone like me' organisations online? Looks like a really need to find people near me who can listen and just be there.

  • Hi TheaT. Have you started the treatment yet? If not, I am sure you will find your cancer nurses so much nicer than the doctor. Mine gave loads of information, answered all my questions, and were just lovely.  Can't really comment on your friends, as mine have been the complete opposite. Checking up on me a couple of times a week, offering to run me to appointments if needed etc.(I'm not driving atm as I still feel like a rabbit caught in headlights) Yours may be is shock/denial and don't know how to cope/what to say to you. Hopefully you have someone who will step up to help you through this. What ages are your kids? We told ours on day 1. There were a lot of tears obviously but they have been brilliant.  I'm barely allowed to make myself a cup of tea! Hope your friends step up for you, and you get an empathetic cancer nurse to support you. X