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Ribociclib/Letrozole Combo - How long have you been on this plse?

elisewjkelisewjk BrisbaneMember Posts: 50
Hi Everyone, I've been on the Ribociclib/Letrozole/Denosumab combo now, successfully since Nov 2018. I take only a low dose of Ribociclib, 200mg daily and so far so good. However, I'm heading towards the 18th month mark now and starting to get a little apprehensive about how much longer it will be effective for. I've read studies that have indicated to up to between 20 months and 30 months success for some lucky people. How long have you had success for? Cheers :)
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Comments

  • LouweezerLouweezer Member Posts: 24
    Hi @elisewjk I am on the same combo as you but 600mg daily for three weeks/one week off. I was diagnosed in Dec 2018 with de novo stage 4 with spinal mets.  I had a great PET scan result in Jan 2020 so steady as she goes. I feel the same as you, how long can keep this going for. It would be interesting to know when it was first prescribed in Australia and how those ladies are doing today. Are you out there ladies? Please let us know! X
  • LucyDeeLucyDee Member Posts: 107
    Yes me too @elisewjk,  but like @Louweezer, 600mg 3/1. Since June 2018 I had a very itchy arm initially but that didn’t last. Last bone scan showed some progress re bone mets. Radiation of T11 is an option but it could crack the bone so Oncologist is hesitant
  • AngeloAngelo PerthMember Posts: 31
    Hi Everyone , I’m on my 18th cycle / 600mg daily and doing ok. Mets lung . Thinking of you all xxx
  • ChristaChrista MelbourneMember Posts: 2
    Hi everyone, wondering how you all doing since last comments? 
     @elisewjk @Louweezer @wokeupthismorning @LucyDee @Deebs @Angelo
    Since Nov 2019 on 400mg Ribo and Letrozole too, with monthly injections of Zolodex and every 3mth Xgeva. Mets spine and hip. Last scan show stable. 
     
  • LucyDeeLucyDee Member Posts: 107
    Another bone met in my skull came up in scan taken August 2020 - that’s 3 in my skull now, so I was prescribed Tamoxifen alone. Radiation to t11 went ahead and subsequent scan showed met had shrunk a little - so it’s no longer pressing up against my spinal cord - which was the goal.
  • AngeloAngelo PerthMember Posts: 31
    Due to see Oncologist in two weeks. Coping well with treatment, actually even better with giving up work 😃 . Stay positive and enjoy each day xx
  • elisewjkelisewjk BrisbaneMember Posts: 50
    Hi Everyone, I've been on Ribo's 200mg, Letrozole and monthly Denosumab needles since Nov 2018. Denovo with bone mets in spine. Scans just before Xmas, still holding everything at bay, next scans in March. So I've had 27 cycles now, still hanging in there! :) Must admit tho, have a little anxiety in the back of my mind as to when I might progress... But for now, I'm continuing to enjoy life and do all the things I like to do :) And I'm still coping ok with working full time, bonus :)
  • elisewjkelisewjk BrisbaneMember Posts: 50
    Hi @LucyDee - I'm sorry to hear about your skull mets, how will they be treating those? And I'm glad to hear your T11 radiation has been somewhat successful. I too have a spot in T11 amongst many others along my spine - at this point still relatively small and stable. May I ask how you are coping on the Tamoxifen? I understand that will likely be my next treatment also... Take care of yourself, hugs! :)
  • LucyDeeLucyDee Member Posts: 107
    Hi @elisewjk,  I’ve had skull and spine mets since my initial diagnosis March 2018, which I had been taking Ribo/Letro combo for since June 2018. But when third skull met came up August 2020, my Oncologist changed me over to Tamoxifen. The effects are similar ie it makes me feel menopausal - run hot and cold. Less tired....I think...who knows really. And initially it made me feel like I was coming down with the flu - but that seems to have eased. I hope the effects are minimal for you and that it works. Have a good weekend. Hugs back. :)
  • DeebsDeebs Langwarrin Victoria Member Posts: 12
    Hi everyone,
    Still here and going strong 😀600mg Ribociclib + Letrozole and 6 weekly denosomab 33 months and stable disease.
  • LouweezerLouweezer Member Posts: 24
    Hi @christa still going strong - last scans all good. De novo with tumour at T11 which was pressing on my spinal nerve so it was removed and I had radiation - all ok. Still have pain which is managed with some good drugs...

    I feel the same as a lot of the ladies here - I am past the 2 year mark on the Ribociclib 600mg/letrozole/denusomab combination and wondering how long a can keep the nasties at bay for. Great to hear @Deebs is 33 months in and stable :) 
  • Not_good_63_57Not_good_63_57 Haigslea/Marburg qld Member Posts: 56
    My question is only started ribociclib and blood test came back bit low in white cells has anyone had this 
    I have no problems taking that tablet so don’t want it to stop
    have cancer in breast and bones in back 
  • elisewjkelisewjk BrisbaneMember Posts: 50
    Hi, this seems to be quite common. Mine are often lowish and my netraphils hover around 1.0-1.2. I have to stay above 1.0. I'm on 200mg Ribos for 29 cycles now. Was de novo with bone/spine mets, diagnosed in Oct 2018. How that helps some? Hugs 
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