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

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Comments

  • laine615
    laine615 Member Posts: 102

    Welcome back Forza!! Glad you had a great time. The pic is awesome. Post more if you've got them. Love that they put you in business class.

    I know what you're saying about the dry hands. I have terribly dry hands and legs. It's gross.

    Hope everyone is doing well!


  • forza
    forza Member Posts: 150

    hi Lauren

    Well , I was panicking because so many people were coughing and I just started my rest week , I know from before getting my WBC to that magical 1 again is always tricky. The head stewardess’s father just had a brush with cancer so obviously she was very sympathetic. And row 1 was empty anyway. Really cheered me up. Never hurts telling them why you would want to wear a mask in a flying incubator of viruses. Good luck

    Jenn


  • forza
    forza Member Posts: 150

    hi Laine

    My legs are fine. The dry hands are getting painful and when I had to go to first aid for getting a metal splinter out my finger 🙄🙄 In Norway ... that nurse said : what happened to your nails ? Are you on chemo ? Great,

    They seem to be flaking and I'm scared they'll fall off .

    Rather be bald than have no nails !!!

    Will try and find another pic for you Eta :(iPhone I’m afraid , no big cameras for me)

    Jenn

    image

  • laine615
    laine615 Member Posts: 102

    The ligjts are amazing!!! I've always wanted to see them. I'm so jealous!!

    Sorry about the painful dry hands. Have you tried putting really think lotion on them and wearing thin cotton gloves? I've heard that really helps.

    What does your MO say about your nails? Mine are not peeling and grow like crazy but they are getting weird lines and ridges on them. I don't think I've ever lost a nail. I wonder if it's painful.

    Hope the hands get better soon!

  • mac5
    mac5 Member Posts: 85

    forza

    Don’t mean to butt in to your conversation but...have you tried soaking your hands/feet in white vinegar and warm water combination? My experience with chemo buildup under my nails was like a “salt” that raised the nail up on the nail bed.

    The vinegar acts as a solvent for the “salt”. May not help with the dryness but it certainly works to save your nails.

    Beautiful pictures

  • traii
    traii Member Posts: 379

    awesome pics Forza👌 glad you had fun. What a bonus getting business class😁

    I can't answer nails si8tuation as I do SNS nails but dry skin yes. I use a non perfume sorbolene hand a nail moisturiser which works a treat

  • kanga_roo
    kanga_roo Member Posts: 302

    Forza, so happy your holiday was a success! So nice to have a bit of “normal” in our lives.

    Winter and air conditioning is always worse for our skin etc... I know when I holiday in Bali the humidity clears up my skin and I just generally feel better, which makes me wonder if I should buy a humidifier... Australia is particularly hot and dry.

    Hope the rest of you are squeezing a bit of happy “normal” into your life too!

    Hugs

    Jackie

  • forza
    forza Member Posts: 150

    Laine : yes yes on the ridges and lines , that's how it started and how they are splitting and breaking. Oncology is only concerned about my appetite and poop , which is perfectly normal I dare say. Having lost some weight was “a thing" , hadn't eaten normally for 3 weeks after the wisdom teeth saga and they decided to properly weigh me just then. Funny lot these doctors. I'm SO gonna show them my hands on Monday !!! Hoping my labs are good enough to start a new box of Kisqali straight away. Subjectively I think the bobble in my boob might have shrunk ????? Scan and ultrasounds only end November :(

    I've lost toe nails before , marathon “healthy" problems. Previous life. Doesn't hurt , the softer new nail grows simultaneously under the falling out one ?!? If that makes sense ?! But this seems different.

    Mac5 : please please do butt in !! yes , for the first time in my life I have visible nailbeds and unfortunately they are indeed raising up ! Thanks for the tip. I need to give my sinks a good clean and always use vinegar for that so 👍👍

    Thanks Traii ... I did buy a scented hand cream , was desperate. Will go to pharmacy after my labs Monday.

    Kangaroo ... I'm not a girly girl (apart from the ex-long hair) so never bothered before with all this . I was like : dry skin in winter , so what ? But this particular dry is painful so gotta catch up on creams etcet.


    Is anyone here on Instagram ?? DM me your handle , I'd love to add some stage4 allies .

    Editing : seeing I have no idea how messaging here works , I’m jenneken8 on Instagram just in case

    Strength to us all xxx


  • forza
    forza Member Posts: 150

    Yippie !!!! labs today : white blood cells 1,1 so cleared for another box Kisqali 400.

    New doctor that was really not helpful. Nail problems ?? Cut them as short as possible. Heart palpitations ?? Your ecg 6 months ago was just fine. Etcet ....

    Next month seeing the top guy after scans so that should be a more satisfactory consult.


    Hugs to all

  • laine615
    laine615 Member Posts: 102

    Yay Froza!! Glad you can start another cycle. Well that doc was not helpful at all. How is cutting your nails shorter supposed to help??? Did he say?

  • monarch777
    monarch777 Member Posts: 338

    my oncologist insisted I see an interventionist cardiologist and have a full battery of tests before I started kisqali. I don't understand your doctor's attitude toward palpitations

  • laine615
    laine615 Member Posts: 102

    Hey Joe! Good to see you. Are you back on Kisqali or are you still just doing letrolzole?

  • monarch777
    monarch777 Member Posts: 338

    Hey Lanie, it will be a year in 3 weeks that I'm only on letrozole. No evidence of active disease since this time last year. Just got all clear from cardiologist last week. My only problem, except MBC, is I still have residual lower back pain and avascular necrosis in my hips but even that is improving. It's so weird to have such good health except cancer. Just got back from camping last week. I have to pace myself but I did tur 70 in September and celebrated my 50 Anniversary

  • laine615
    laine615 Member Posts: 102

    Congrats on the anniversary and all clear from the heart doc,Joe!! Also happy late birthday🎉. All of that is just wonderful news. I just had a birthday on the 18th. I'm 47 now.

    It is odd knowing that we can feel so "normal" and well yet still have cancer.

    So glad to hear your good news!!

  • forza
    forza Member Posts: 150

    imageThe oncology pharmacist (yes , I have 3 appointments in a row before I get my hands on that box , totally inefficient system) she's the one recording side effects *on paper* and for example weighing people to measure infusions.

    She recommended Si-nails . It's a special nail varnish ? You slap it on 3 days in a row then remove and repeat , for 3 months. It should make the nails stronger. Vitamins wouldn't help , apparently it's such a common but minor chemo side effect it's usually not even mentioned in the leaflet. Not minor to me ! I'll try that varnish and report back.

    Hello Joee. Re- my heart. Only that QT is important with Kisqali so any other murmurs or palpitations don't matter to them. My QT was fine 6 months ago. New guy , don't like him.

    I do have an appointment with a dermatologist to inspect all my freckles in a few weeks. A few of them on my back are looking a bit angry. Likely age ?!! Can't be the sun because I avoid summers altogether :)

    Hugs to all xx


    (Edited to add the pic , looks like normal nail varnish I know 🤞🤞

  • laine615
    laine615 Member Posts: 102

    Forza, I hope the varnish helps. Are the hands any less painful? I hope you get some relief soon.

  • forza
    forza Member Posts: 150

    Thanks Laine xx

    Overall whilst creamed up , those hands do feel better but I cracked open my skin in places like between thumb and index finger ... ( a bit like when you split your lips in the corners in winter ? ) ...? that obviously needs healing time ... Ach , still better than the alternative.

    Impressed even on layer 1 of that nail varnish , I’d say that feels like it’s doing something positive. I was sceptical but might be good stuff. Very liquid and sort of sinks into those ridges ? Hopeful I’ll grow the breakage out , keep them short and be a lot more careful.

    I know it might seem minor but handcrafting is my life so I’d rather be bald than have shitty hands/ nails.

    Why don’t they give this stuff to us on day 1 if it’s that common !!! 😡 😡 Those few days I “just had breast cancer” , there were offers of therapists , nurses , practical help ... then the petscan and biopsies came back all wrong , I changed departments and all the pink happy things disappeared ?!??

    Sorry people , I feel like I’m spamming this board ://

    Hug

  • laureninphx
    laureninphx Member Posts: 138

    Not spamming at all, Forza!  I'm sorry you're having such a hard time lately. 

    I understand the "just had breast cancer" thing. It's a whole different ball game now.

    Hoping you feel better soon. 

    Lauren

  • laine615
    laine615 Member Posts: 102

    Oh Forza, you are not spamming this thread. This s**t sucks for sure. We're here to listen to any rant you have.

    Speaking of cracked lips in the corners...I had that all last week. Pissed me off. It's better now, thankfully.

    I have lab work tomorrow to see if I can start Kisqali again. I've been off 2 weeks due to elevated creatine. If it's low enough I'll start back at 400mg.

    I hope the nails and hands heal quickly for you.

    Hugs to all,

    Laine


  • forza
    forza Member Posts: 150

    Question : does anyone here get the yearly flu vaccination ? I normally never get it , but nothing is normal anymore these days

    My chemo doctor was mumbling something about it but by that time I wasn’t listening to him anymore. Seeing he ignored my heart and hand issues I was in a mood by then.


    Thanks x

  • kanga_roo
    kanga_roo Member Posts: 302

    Hey Forza,
    I have a flu shot every year and last year my Dr immunised me against pneumonia too. I think we should take every precaution we can because our white cell count is always under stress.

    I also try to avoid sick people when possible, tend to wash my hands more often, especially after shopping etc.

    I don’t want to live in a bubble, and I love to socialise - I have never really had to worry about my health in the past, always got over colds etc pretty quickly, but now I don’t want to take the chance... Damn cancer!

    On the upside, hopefully our combo keeps working,

    Hugs and happy Halloween to all!.

  • forza
    forza Member Posts: 150

    thanks Kanga , I'll phone up to ask x

    ETA. :

    Phoned the hospital.it is highly recommended but because of neutrophiles (yes , those again) it has to happen first few days of a cycle ... so it’ll be in November for me.

  • laine615
    laine615 Member Posts: 102

    Just chiming in about the flu shot. My MO recommends getting it also. I've never had one but should be getting on today.

  • forza
    forza Member Posts: 150

    Laine , how was the creatinine and the flu shot ? I had 3 during my lifetime , used to volunteer in a doctors practise whilst I lived in England so they practically chased me down with that needle. Not a great believer in the flu vaccine , mix always a bit of a hit and miss (I am a believer in other vaccines , don’t get me wrong). Will have it done though.

    Kanga , I’m one of those people who already avoided “possible” sick people and washed my hands 100 times a day. The irony of it !!!

    Glad to report the hand cream (has lots of glycerine in it) is working really well , yippie !! The special nail varnish is also doing it’s thing for now but clearly those nails need time to grow out again. I tried to claim it back off national insurance but they said no ☹️ The calcium is also a no because they are classified as food supplements not drugs ☹️

    Waving at everybody x

  • laine615
    laine615 Member Posts: 102

    Forza, Thanks for asking about me. The creatine returned to normal and my dose was reduced to 400mg. I was supposed to get the flu shot but the clinic hadn't received their shipment yet. I'll have to wait until the 25th to get it.

    So glad the cream is working so well and your hands and nails are on the mend.

    You used to live in England?! How was it. I've always wanted to go there.

    Hugs to all

    Laine

  • forza
    forza Member Posts: 150

    Great news about the creatinine. My pharmacist said it was better to have the shot a bit later anyway because flu season comes later every year as well. He had them in stock though and promised he’d not run out at all. Belgians are notoriously bad getting a flu vaccine.

    I moved there because of “my English boyfriend” (now ex) and I lived in a pretty but small village. English clearly have a thing about immigrants even white ones from just across the water from Belgium. I left just before the brexit campaign went full steam. So I'm not the best person to ask. They love tourists though : just spend that money and leave again 🤔

    Off to get my zoladex shot , does it ever stop ?

  • laine615
    laine615 Member Posts: 102

    Yikes, Forza, I hope you weren't treated badly. The Brexit thing is crazy from what I've heard on the news. May not want to visit there after all.

    Good luck with the Zoladex shot, I had Lupron(same thing a Zoladex) last Wednesday. Gotta love the butt shots🥴

  • Mandy62
    Mandy62 Member Posts: 34

    Hi All


    Just chiming in to let you know I just had my bone scan and chest, abdomen ,pelvic CT and results are stable. I have been on Kisqali for 2 years and I take 200 mg. It took a good 7 months to iron out side effects , now I just live with the ones I have .My problems are mainly skin and my feet my toenails are horrible .

    I had a TRAM reconstruction in May it has just been revised and I lost my mum 2 weeks ago and the scans are still positive with all this personal sadness.

    Thanks for being there girls and all your conversation I might not say much but I am here.


    Love Mandy


  • traii
    traii Member Posts: 379

    Mandy

    So sorry to hear about your mum. Sending you hugs and strength❤

    So good to hear you're stable and been on 200mg for 2 years. Gives us all hope.

    I got my results today and happy to say I'm stable too some reduction and TMs are down. My chest CT Still shows some infection and cancer ruled out from bronchoscopy so they think it could be a possible SE from kisqali🤷♀️ will keep monitoring at 3 months CT and onto my 10th cycle of 600mg on Monday. Has anyone else encountered this?

    Cheers to the weekend x


  • laine615
    laine615 Member Posts: 102

    Mandy, sorry to hear about your mom. I'm very happy to hear about the stable news. I just decreased to 400mg and it's good to know there are people that do well on lower doses.

    Traii, good news for you too!! That's wonderful. I hope the infection resolves quickly.

    Waving hello to everyone else.

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