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Kisquali

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  • Louweezer
    Louweezer Member Posts: 24 ✭
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    Absolutely!! Oh and @glynnis I have the horrible messy and thin nails as well - I have started getting an SNS manicure which thickens up my nails and stops them breaking. Yes, the SNS thins your nails as well but I have had it put and taken off since Dec 19 and I still have fingernails!! A small win but a win nonetheless! 
  • Glynnis
    Glynnis Member Posts: 353 ✭
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    @Louweezer that's good to hear, unfortunately can't afford to do, ive taken myself out of work on sick leave due to the low immunity involved with these meds but great to know for future reference. 😀
  • Louweezer
    Louweezer Member Posts: 24 ✭
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    darling @Glynnis I hear you - our contract got cancelled in the first week of this pandemic so all non essential spending has gone off our list. I have the last polish slowly growing off so I will see what state my natural nails are in a few weeks! 
    I hope you are staying safe at home like all of us in our situation - I have been housebound for two weeks tomorrow after a final family get together in Thredbo thanks to the OTIS Foundation who I found out about thanks to this BCNA website. Then two days later lost my job. Crazy times ladies! I hope we can all stay positive and thank god for these groups so we are not alone. 
    Big love to you all out there xxx
  • wokeupthismorning
    wokeupthismorning Member Posts: 4 ✭
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    Hi :) I've been on Ribo/Kisq 400mg + Letrozole since Aug 2018 for lung and bone mets. Scans are good so far and progress seems to have halted! I've never had a PET scan, only CT and MRI.
    My hair is VERY thin with bald patches. I'm 56 so that could have something to do with it. My joints are painful, especially hips. And skin is reacting to meds - burning all over and nerve pain keeping me awake.
    I used to have nice feet...
    MBC is scary and lonely. Glad to be on this forum.  <3
  • Glynnis
    Glynnis Member Posts: 353 ✭
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    Hi @wokeupthismorning, in with you about the skin my hands are dreadfully dry all the time and the skin peels off, yes hair is getting thinner especially right at the front, I’ve been on same combination as you since April, 2019, only difference is I’m on 600mg of kisqali. I try not to think about the Mets much, yes can be lonely sometimes especially when people don’t understand exactly what your going through, my last blood test the ca 15 had jumped from 62 to 82 so another blood test in a couple weeks time hopefully hasn’t kept going up, stressful time
  • Jacqui64
    Jacqui64 Member Posts: 16 ✭
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    elisewjk said:

    Hi #joinmelb, I've been on the Ribociclib/letrozole/denosumab combo successfully since Nov 2018. I was Stage 4 de novo with bone mets in my spine. My tumours have shrunk significantly and spine mets is inactive/stable.  I'm on the lowest dose of 200mg of Ribo's 3 weeks on, 1 week off. I would be questioning the dosage of Ribo's that you are on, it sounds like you have a few too many side effects. Perhaps discuss this with your Onco? I've been thru all the stages of 600mg and 400mg doses which didn't work for me, I've had varying/different side effects on both doses. 600mg 60% of people can't stomach at all, but its the protocol they have to follow to start you on. On 400mg, my neutraphils were still dipping too low (amongst other side effects), so I (luckily) finally settled on 200mg with little/bearable side effects and has been working very well so far. My hair has thinned a little bit (ie. some fall out more than normal), however it does continue to grow back and it certainly doesn't fall out in clumps. I have my hair cut short, and use thickening shampoo and conditioner. My friends tell me it looks the same as it used to, so it can't be too bad :smile: Big hugs and kind regards  :)


    Hi Elisewjk.  I'm in the middle of trialling Ribo, and a couple of my liver levels went out of whack in my blood test.  I was on 400mg.  I have to decide whether to change the medication completely, or whether to try 200mg.  Did you have a similar reaction on the 400mg?  I'm not sure how much of a difference there will be between 400mg and 200mg.  I'm thinking I'd probably have to at least try it, or I'll always wonder "what if".  Would love to hear your opinion if you don't mind. xx
  • Joinmelb
    Joinmelb Member Posts: 38 ✭
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    Hi Jacqui64,
    I'm now on 2 Ribo per day alongside Anastrozole now. I haven't had any liver issues though so sorry I can't be of more help to you, sorry!!! I hope someone here can help answer your question but just wanted to say I'm now up to round 23 of it and feel pretty well, except for the ongoing manky feet issue!!!  
    Due to Covid, we dropped the ribo to 2 tabs per day back in late March so that my white cells didn't dip as low and it would hopefully be easier to fight off any covid nasties if I got it. Surprise, surprise, my hair started growing back at a rapid rate so when I had my review in June my oncologist said that as I'm so stable we could leave as 2 ribo per day instead of going back up so that my hair would continue to grow. I was a little concerned dropping the dose but she did say people generally didn't tolerate it, or are as stubborn as me, as long as i had so she was happy with reduced dose due to me doing so well. Am still on 2 tabs now and will review again in december with a pet scan to check on everything. Fingers crossed! Hope everyone is coping ok! 
  • Apricot
    Apricot Member Posts: 2 ✭
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    I have just recently started on Kisquali and Fulvestrant injections.The first 5 days was horrendous, with severe diarrhoea ,tiredness and sickness. My Oncologist took me off it for three weeks and once again started on one 200mg tablet. I look forward to the weeks break but on commencing again still have a few issues until it settles.  My hair is thinning and about to make the big decision to have it trimmed to a shorter style. I would like to have a colour change But a bit skeptical if chemicals in the hair colour would be safe.
    I would like to stick with this treatment as I am now eighty three. Thirty five years is a life time to dealing with breast cancer and Iam hoping this drug will give me a few years more,
  • Ellamary98
    Ellamary98 Member Posts: 157 ✭
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    35 years!! All power to you, @Apricot. I'm about to tick over ten years and I'm exhausted. I never took the Kisquali and Fulvestrant as a combo, but have experienced both. I don't recall having any dramatic side effects from the injections, but the Kisquali took some time to settle down. Good luck-I hope the effects have reduced for you.
  • Apricot
    Apricot Member Posts: 2 ✭
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    I would be so pleased to hear from anyone dealing with hair loss. I am having Fulvestrant injections along with Kisquali. This is now my second time around and at the age of eighty three just feel can I deal with one more thing after thirty five years
    of mamograms,lumpectomy breast removal later, cancer now in my spine causing drop foot. I just want to keep what hair I have and just live with some dignity. I would appreciate any little clues that might help.
  • Ellamary98
    Ellamary98 Member Posts: 157 ✭
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    Hi Apricot.   My hair was already thin when I started each of those drugs (separately). It actually thickened up significantly when I moved off the hormone-based treatments, but I know how deflating it is to watch your hair disappear.  It can feel like the final indignity, especially when you know it is not just temporary. I am preparing for hair loss with my next, impending, line of treatment and this time around have decided to have a wig consultation and try some out. Otherwise, I reckon it's all about a very short cut and great head gear. Maybe a good thickening shampoo (I used Phillip Kingsley products). Best of luck to you. xx
  • brightspace
    brightspace Member Posts: 445 ✭
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    Hi Apricot
    I was on Kisq and fulvestrant for 2 years had some hair thinning first year but not too noticeable...though my straight hair did develop a curl on half of back ....so weird
    When first diagnosed with mets ...7 years ago I decided to not do hair colours as my scalp was tender
    Short and Grey for me with coloured bandannas or vintage scarf is my preferred style
    All the best
    Bright in hope
  • Jen_B
    Jen_B Member Posts: 18 ✭
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    Hi everyone, been great to read through this feed that started back in 2020, not sure if you ladies are still on this combo and how it is going?

    I've been on kisquali/letrozole since July 2022. Since treatment started I've developed sensitive teeth, never had this before, now it includes jaw pain. Anyone else experience this? Or Do I put it down to joint pain? I've been back and forth to the dentist, I'm now getting a night splint to see if this helps.

    Sending everyone strength xx
  • Ellamary98
    Ellamary98 Member Posts: 157 ✭
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    Hi @Jen_B. I’m done with this treatment and onto paclitaxel now. Sorry to hear that you’re having jaw pain- I hope they’ve found an answer for that. You don’t clench your teeth at night?
    Xx
  • Jen_B
    Jen_B Member Posts: 18 ✭
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    Ellamary98 said:
    Hi @Jen_B. I’m done with this treatment and onto paclitaxel now. Sorry to hear that you’re having jaw pain- I hope they’ve found an answer for that. You don’t clench your teeth at night?
    Xx
    How long were you on Ribo for?

    I do clench, especially because of the added stress the past 12 months. I have been made a night splint & will most likely get some botox ion my jaw as heard that helps.

    I had excruciating pain last week... turns out the root on my back molar has now died and I need a root canal. Not sure if treatment related or just plain bad luck, but happy to have an answer to all the pain.

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