Ribociclib/Kisqali with Letrozole - Any one on this combo?

Options
1…1516182021…40

Comments

  • JoE777
    JoE777 Member Posts: 628
    edited April 2019

    Kanga, it's my understanding she will put me back on it when it flares since it didn't fail. May 15 I have large battery of bloodwork and onc visit. The letrozole is still tough on mind and body but it's still working.

    · Share on FacebookShare on Twitter
  • Operahouse
    Operahouse Member Posts: 46
    edited April 2019

    hi all,

    I just had my first ct report post diagnosis. Stable with significant reductions. I just finished my 4th cycle ( 1 on 600 mg, 2 on 400mg, 1 on 200mg). So I will continue on 200mg. I'm so happy and thank you so much for your support.

    · Share on FacebookShare on Twitter
  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited April 2019

    Opera, That is wonderful news! From what I am reading on this thread, the lower doses seem to do the job which is a relief for those who suffer side FX. Doing a happy dance for you!💃🏻💃🏻

    · Share on FacebookShare on Twitter
  • Dragonfly46
    Dragonfly46 Member Posts: 13
    edited April 2019

    I am on Anastrozole and Kisqali. I will ask my oncologist tomorrow why I am not on Letrozole as most people seem to be. I am in the UK and Anastrozole so maybe with Brexit etc that is why as it is made in the UK.

    · Share on FacebookShare on Twitter
  • Dragonfly46
    Dragonfly46 Member Posts: 13
    edited April 2019

    By the way I have tried editing my profile but cannot find where I can put that I am in the UK

    · Share on FacebookShare on Twitter
  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited April 2019

    Dragonfly,

    Click on your name onthe left side of your posts and it should take you to where you can add all that.

    · Share on FacebookShare on Twitter
  • Mandy62
    Mandy62 Member Posts: 34
    edited April 2019

    I have scans next week .I see the Oncologist for results next Friday.

    Mandy

    · Share on FacebookShare on Twitter
  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited April 2019

    Mandy, keeping my fingers crossed the lower dose is still working for you

    Jackie

    · Share on FacebookShare on Twitter
  • Cranky_Koala
    Cranky_Koala Member Posts: 7
    edited April 2019

    Hi to all

    Just wondering if any/ many of you have had delays in kisqali cycles due to low neutrophil levels ? my cycle 9 we delayed 10 days - as we were travelling, however again in cycle 10 - another week - on 400g per day - hoping this is not a problem cheer Ali

    · Share on FacebookShare on Twitter
  • Dragonfly46
    Dragonfly46 Member Posts: 13
    edited April 2019

    Just got back from my oncologist. Fortunately my bloods and ECG are good so I keep taking the tablets for another 4 weeks when I go back for a repeat prescription. Hopefully it will shrink it enough to be operated on.

    · Share on FacebookShare on Twitter
  • Idajakoc
    Idajakoc Member Posts: 75
    edited April 2019

    Dragon I am crossing fingers for you!

    Mandy I hope it is working for you!



    · Share on FacebookShare on Twitter
  • sherry35
    sherry35 Member Posts: 409
    edited April 2019

    it's nice to hear good news opera!

    Dragon-wishing you the best of luck!

    Cranky- I had a 2 week delay between cycle 2 and 3 because of low neutrophils. I switched to 400mg on cycle 3 and have been fine since- now on cycle 6.

    Mandy- wishing you the best for good scans!

    Cheers all!

    Sherry

    · Share on FacebookShare on Twitter
  • Dragonfly46
    Dragonfly46 Member Posts: 13
    edited April 2019

    Saw the oncologist today and bloods and ECG fine so keep taking the tablets until it is small enough to operate it. I go to the hospital every 4 weeks.

    · Share on FacebookShare on Twitter
  • Mandy62
    Mandy62 Member Posts: 34
    edited May 2019

    Thanks for the well wishes. in the beginning I was told to take an extra week or two off the Kisqali for various reasons. It took a good 5 months to sort out all the issues . I am on other sites where the girls are not stage 4 and complain about side effects from letrozole and stop taking it. It is our life line and when my Oncologist cut me back to 200 mg of Kisqali I cried, I am now so grate full that I can take the 200 mg. I am not happy about my hot flushes and aching joints but I am so happy to be here and see my beautiful family grow.

    Good luck girls we are doing a good job.


    Mandy

    · Share on FacebookShare on Twitter
  • Cranky_Koala
    Cranky_Koala Member Posts: 7
    edited May 2019

    Hi to all

    Thank Sherry35 for your advice. So another week delayed on cycle - those pesky neutrophils - but this is apparently ok with my oncologist as my tumour markers are continuing to decrease after 9 cycles on this new targeted treatment - I reiterate Mandy62 on praising this drug and being grateful for it being available at this time in this combo - my hair looks like shite , but what it might actually work for a lot of us longer than we all think - time to get on with life and deal with the stuff when it comes - best wishes to all Cheer Ali

    · Share on FacebookShare on Twitter
  • Mandy62
    Mandy62 Member Posts: 34
    edited May 2019

    After 18 months on Kisqali and Letrozole my scans have come back with a reduction from last scan.

    Mandy

    · Share on FacebookShare on Twitter
  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited May 2019

    Mandy, so glad to hear that! Are you on 3 or 6 monthly scans now? I’m wondering as we get further out with this combo, what the protocols will be.

    I have bloods tomorrow, CT Thursday and onc on Monday - will let you all know how I get on.

    Jackie

    · Share on FacebookShare on Twitter
  • Mandy62
    Mandy62 Member Posts: 34
    edited May 2019

    Jackie good luck with your scans. I have 6 monthly scans but due to my renal cancer and only having one kidney I hadnt had a bone scan for 9 months because of the tracer.

    I am going to ask my Oncologist on Friday about the scans.

    I am on 200mg . I am amazed after 18 months there is more shrinkage . Could also be from the targeted radiation.

    Mandy

    · Share on FacebookShare on Twitter
  • sherry35
    sherry35 Member Posts: 409
    edited May 2019

    Mandy, so great to heR some good news!

    Kanga- good luck with your appointments! Will be thinking of you

    · Share on FacebookShare on Twitter
  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited May 2019

    Hi all, just got my CT results back and can’t tell you how happy I was to find that tumours are still reducing. Initially I had activity in my Lymph nodes, but this seems to have disappeared! Will see what my Onc has to say on Monday

    image

    · Share on FacebookShare on Twitter
  • Dragonfly46
    Dragonfly46 Member Posts: 13
    edited May 2019

    Hi Kangaroo, That is great news!

    · Share on FacebookShare on Twitter
  • Operahouse
    Operahouse Member Posts: 46
    edited May 2019

    Kangaroo, congratulations! So happy for you ♥️

    · Share on FacebookShare on Twitter
  • sherry35
    sherry35 Member Posts: 409
    edited May 2019

    Congrats Kanga! That is great news

    · Share on FacebookShare on Twitter
  • Cranky_Koala
    Cranky_Koala Member Posts: 7
    edited May 2019

    hi Kanga

    What fantastic news 🤗🤗 cheers Ali

    · Share on FacebookShare on Twitter
  • Idajakoc
    Idajakoc Member Posts: 75
    edited May 2019

    Kanga I am so happy for you!

    Did any of you ever get a genetics visit or test. I donr know what to call it. I have one next week and I have no idea what is going to happen. I can google it but I have learned it the hard way that it is a bad idea.

    Xoxo

    Ida

    · Share on FacebookShare on Twitter
  • sherry35
    sherry35 Member Posts: 409
    edited May 2019

    Iwill hopefully be starting my 7th cycle on Thursday! My hair has been falling out at an alarming rate! It's gotten worse each month. I may have to cut it off. Anyone else?

    · Share on FacebookShare on Twitter
  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited May 2019

    Hi all,

    Ida, my onc has never mentioned that testing, so maybe not protocol in Australia.

    I saw her on Monday, and she has put me on 3 monthly bloods to check cancer markers, and if they are OK, CT in another 3 months (6mths between scans, Yay!

    Sherry, I know what you are going through! My hair has thinned too. I haven't got any bald patches, but I feel a bit self conscious that it is thinner. I have a good hair dresser who has cut it so it looks “even" all round. I use a hair straightener when I go out, which makes it look OK. If it keeps thinning, I think I will buy a wig for when I go out for special occasions - apparently I can get a script for one here in Australia.

    I am so thankful to be on this combo and hope we all get a good run with it before having to move on - all treatments have side FX but overall quality of life is not too bad on this.

    Sending gentle hugs to you all.

    Jackie

    · Share on FacebookShare on Twitter
  • Applepie09
    Applepie09 Member Posts: 7
    edited May 2019

    hello to all.

    I am writing on behalf of my mother. She has foundd out to be stage IV at the end of february this year. Initially she was diagnosed in June 2016, had a surgery and 1 lymph node was involved. She has gone through chemo and radiation as well. And now this...

    My question is.. she is on Kisqali and Letrozole since April 2nd 2019. Her PET CT was on February 14th. It took 6 weeks to start with Kisqali since she went on biopsy, her mets are in lymph nodes in chest and suspectably in lungs (they havent confirmed since FDG on Pet ct was low). After 3 months on Kisqali, she will take another scan, and if there is no progression, she will get Kisqali for another 3 months. Its how it works here...

    I am scared, since it took 6 weeks to start with it, what if there was some small improvement of the diesase during those 6 weeks of waiting and kisqali now hasnt shrunked it? If you understand me... that will mean it doesnt work when it maybe does.

    She is ER+ , HER2- and ki67 is 11% if it means anything.


    Do you have similar experiences?

    Thank you and best of wishes for all of you.

    · Share on FacebookShare on Twitter
  • JoE777
    JoE777 Member Posts: 628
    edited May 2019

    I would say she'll stay on the combo until it fails and progression is detected by her scans. This is an over simplistic answer but it's how it often works

    · Share on FacebookShare on Twitter
  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited May 2019

    Hello Applepie,

    You must be very concerned about your mum. Where are you from? This may make a difference about the protocols of scans etc.

    Generally speaking, if there is no progression they will keep your mum on the combo for, and check every 3 months. If there is progression or raised cancer blood count they would probably continue the combo for another 3 month to make sure if it is/not working.

    Hope all goes well, and remember to check in here if you have more questions - so many people on this thread who are willing to share their experience and knowledge.

    Jackie

    · Share on FacebookShare on Twitter

Categories