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

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Comments

  • jo-jo2018
    jo-jo2018 Member Posts: 139

    Hi I'm new here, just recently got my stage IV diagnosis after being stage II in 2018.

    I have just started with Ribociclib/Kisqali with Letrozole. The first 2 days were pretty crappy with nausea & vomiting but yesterday and today have been ok. I also had an incredible itchy rash on my chest on day 3 and a dull headache since I started. I also started Zoledex

    Nice to "meet" you all


  • kanga_roo
    kanga_roo Member Posts: 302

    Jeb, so glad to hear things are stable. I have had my 4 shots too and I'm lining up for my flu shot and pneumonia shot… our flu season is about to begin here in Oz.

    Actionaunt, some great ideas there, interesting about the change in cycle too, let us know how you go with that. Sometimes I take a week off when I get really tired, but mainly have been on the 400mg 3 weeks then 1 off.

    Jo-jo, welcome to our elite little group! The first month or so on this medication can be a bit of a roller-coaster ride but things settle down and life returns to almost normal.

    I'm happy to report my cancer markers are 19, the lowest they have ever been! Sugar and cholesterol are all good too! To celebrate I'm going to have a glass of bubbly, and stuff myself with a big Easter egg next week!

    Hope you are all doing well!

    Cheers, Jackie



  • mozuke1
    mozuke1 Member Posts: 42

    Hi everyone,

    I'm Maureen, diagnosed de novo in Oct '21 with bone mets. I just finished a 16 week course of chemotherapy last month and yesterday had hysterectomy and BSO. I will be starting Kisqali in 2 weeks. I had planned to take 2 weeks off of work after surgery, but when my MO told me to start Kisqali in 2 weeks, I decided to take an extra week off so I can see what kinds of side effects I will have and how I can adjust. Not looking forward to it, but thankful for the treatment. Hope to be here for a long time..

  • kanga_roo
    kanga_roo Member Posts: 302

    Welcome Maureen

    I hope this combo works well for you. Are you on letrozole as well? You don’t say how old you are, but probably the worst initial side effect is hot flushes as your body adjusts to the reduced hormones in your system. Most of us have gone through a range of side effects, which no doubt you have researched or discussed with your oncologist. Whatever your experience, you can always ask here, there is usually someone who has gone through the same thing.

    I’m in to my 5th year on the combo and leading a fairly normal lifestyle.

    Cheers,

    Jackie


  • mozuke1
    mozuke1 Member Posts: 42

    Hi Jackie, yes I am on Letrozole. I am 49 and was still having regular cycles when I was diagnosed. I started treatment with a Lupron shot to shut down my ovaries and then chemo took over. I finished chemo 3/11 and started Letrozole a couple of weeks later. I have been having hot flashes since Nov. they are annoying and keep me up at night sometimes, though it is getting better.

    I’ve tried updating my profile with my new meds and treatments but it doesn’t save :(

  • kanga_roo
    kanga_roo Member Posts: 302

    Maureen, hot flashes are very difficult to control. I initially went on a product called Effexor, which is also a mild anti depressant. It worked really well and I took it for about 4 months and then slowly weaned my self off it. It can be quite addictive. My flashes only ever seem to affect the top half of my body, so I always dress so I can take things off, like a jacket or cardigan etc. I sleep with a fan I can turn on at night (remote control) and a little fan at my computer desk. Having a pack of hand wipes in your handbag can provide some relief when out an about.

    And talking of hot, I’m about to mung in to a hot cross bun! Have a great Easter break everyone! XXO

  • Actionaunty
    Actionaunty Member Posts: 15

    Hi Jackie and Maureen

    Jackie - Very good to hear that your cancer marker is so low at 19 - my latest 20 - so we are both doing well. My Palbociclib cycles of 3 weeks on and 2 weeks off are giving my blood time to recover and the cancer marker is stable. The liver is a wonderful organ and it can regenerate itself and mine has done so. Sadly the lesions in my spine and pelvis are still there as shown on latest MRI. I have had pain from them in the past three months and was recently advised to try acupuncture, which has helped to reduce the pain.

    Maureen - having had a hysterectomy myself I am surprised that you are going back to work so soon - please give yourself time to recover your strength. Regarding the hot flushes, I agree with Jackie - they are usually from the waist up and I still need socks at night as my feet stay cold! Have you tried Evening Primrose Oil for the hot flushes? My oncologist suggested it and it helps me and a few of my friends going thru normal menopause. Start with 1g capsules and increase until it helps - we find 2g or 3g per day alleviates the worst.

    Very best wishes to all on this section. Beverly

  • jo-jo2018
    jo-jo2018 Member Posts: 139

    Kanga_roo thank you for the welcome. Unfortunately this combo did not work for me. 1 of my tumors grew 6cm while on the treatment so I am now doing FAC chemo every 3rd week for 8 cycles. Its hell, seeing MO tomorrow for bloodwork to see if cycle 2 will be a go on Saturday.

    Glad this combo has worked for so many of you 😘

  • kkcita
    kkcita Member Posts: 24

    Just wanted to give an update! I've been on ribociclib/lettozole/goserelin/zometa since March 2020. I just had a PET/CT scan last week and got my results today - stable! There's only 3 spots slightly active, and I have a consult with the radiation oncologist next week to discuss pros/cons of radiation to those spots! I hadn't had a scan since June 2020, so I am so grateful for a good outcome so far. I was diagnosed with extensive bone Mets in my spine, pelvis, leg bones and arm bones. Thanks to everyone for sharing your story.

  • mozuke1
    mozuke1 Member Posts: 42

    Beverly, my hysterectomy was done laparoscopically, so I just have 4 small incisions. Recovery has gone very well, and I do only work part time (20 hrs) so I’m not jumping back in to a 40 hour week :)

    Thank you, jojo and kkcita for posting updates. Jojo, I’m sorry this didn’t work for you. It’s crazy to me how different people's experiences can be.

    Kkcita, yay for stable! And for 2 years so far!

    I am only on day 3 of Kisqali, so nothing to report yet

    Maureen

  • colek68
    colek68 Member Posts: 2

    Hi , I have been following for a While now . I have Mets in various places including brain. Have been treated with Gamma knife twice which worked, had 3 years of chemo which also worked now on this combo for the last year

    My question is has anyone had SE from different brands of letrolze . I'm in Australia and have had the pharmacy swap brands and my SE have slowly escalated , I think it's the fillers they use.

    I also take my tablets at night so I can function during the day. But even this isn't helping as much. Look forward to your insights .

    Thank

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi Cole,

    Yes!

    My pharmacy slipped me a generic brand called Letroz made by a company called Juno. I took them for about a fortnight and noticed the difference. I complained and they replaced them with my normal script of femara by Novartis. As if we haven’t got enough problems, lol.

    Hope everyone is doing well, heading into the colder weather here in Australia so pulling out the warmer clothes. Had my 4th covid shot and still wearing a mask in crowded places, they are saying the flu is going to hit us hard soon… had my flu and pneumonia shots also.

    Cheers to all,

    Jackie

  • Actionaunty
    Actionaunty Member Posts: 15

    Hi Jackie

    Good to hear that you are OK. I too have had 4 covid shots and so far have kept well. My treatment of 3 weeks on and 2 weeks off is keeping the markers stable and I have been taking iron and vitamin B12 for the past month which has improved my blood results. Best news of all, my consultant gave green light for me to go on vacation and gave me 2 months meds so I have left the grey skies of London for 7 weeks in the Caribbean!!! I had to jump thru hoops to get here but it was worth it. My dear husband of 35 years had a heart attack with cardiac arrest 3 days before christmas 2021 and after 3 weeks in hospital discharged himself home and I have been doing everything since then, so I really needed a break.

    Very best wishes to all on this forum. We are survivors!!!


  • colek68
    colek68 Member Posts: 2

    thanks .I had apotex generic then they changed to sandoz . Will search the ones you said.

    Cheers from wet Qld

  • forza
    forza Member Posts: 150

    hello all. !!

    Oh I don’t like this new white screen forum ☹️
    Maaki my hero , great to see you're getting on with the verzenio ! Hello my dear . Keep well 👍

    Kanga , still a fountain of wisdom… but I’m still stuffing my face with sugar and gluten. Did have my fourth shot in February

    Mexhay : my neighbour of 52 yo dropped dead with a heart attack. Very much a case of survivors guilt. I told his wife : that should have been me. She nodded yes, ofcourse she did. Life is a strange thing.

    Traii , hiya : which drug you're fundraising for for the brain mets ??? A friend of mine just got dx with a brain tumour. He's refusing chemo 🙄🙄🙄

    Oh no JoJo .., Kisqali not working , I'm so thankful to have it.


    anyways . Checking in to say I’m starting year 4 on the Kisqali/ Letrozole combo. Clueless what’s going on inside my body , no scans for quite some time. No new pains anywhere so I’m thinking all is well. Finally been on a holiday post covid. 3 weeks wood sculpting in Tirol. Also given up on plotting my imminent funeral 🤣🤣 so started renovating the house I bought in between lockdowns. Could be around for 20 more years so need to stop camping and start making a home. No bathroom at all now so hosing myself down in the garden these days. My garden is slowly becoming a farm . Baby chickens are pure happiness. Not an addiction , a collection,

    if only those hot flushes would stop , I’d even feel normal.

    Waving 👋 you’re all in my head and heart every day , we got this 💪


    jennifer , from the heart of Europe



  • forza
    forza Member Posts: 150

    Forgot to add the obligatory new chicks pic

    My old adopted rooster still hasit 🤗

    image

  • kanga_roo
    kanga_roo Member Posts: 302

    Jen, you and the chook look great! So glad to be entering my 5th year on this stuff too! Your house should keep you busy for many years to come!
    thinking of you all!

    Cheers, Jackie


  • forza
    forza Member Posts: 150

    thanks Jackie.

    The babies hatched just when I left on holiday so finally meeting the floof was pure joy ! Those high fashion socks are magnificent :)

  • Holiwoman
    Holiwoman Member Posts: 8

    Hi all,

    My mother is entering my third year on this combo. Doing well enough but COVID really shook her. Just wanted to if you guys took your booster doses in your gap week? Or can it be taken any time....

  • ddil
    ddil Member Posts: 92

    HI All,

    I will be starting Ribo, and Letrozole with Xcheva injections - I am switching from Ibrance. I am hoping I will not get a lot of side effects and it can get me stable as I have scattered bone mets to spine. I just want to live awhile longer. I’m fairly stressed today and feeling down. Reading the successes help.

  • mozuke1
    mozuke1 Member Posts: 42

    hi ddil, I can’t speak to longevity, as I have only been on Kisqali (and Letrozole) for 2 months, but I have had next to no symptoms. My blood counts are, of course, low, but within acceptable range and I have been feeling great! I have labs next week, so we'll see what they show. My last PET scan was in Mar and I’ll have another in Aug to see how things are going.

    I can’t remember what shows up in my profile, but I am also de novo lobular with bone Mets. I did a course of chemo after diagnosis in Oct and had BSO/hysterectomy before starting Kisqali 4/25

  • kanga_roo
    kanga_roo Member Posts: 302

    hi Holiwoman, I don’t think timing matters with booster shots, hope all goes well for her!

    ddil, I really hope the combo works for you! People on this thread report side effects in the first month, but then things seem to settle down. Most of us have had it as a first line of treatment, so will be interested to hear how you go. Keep us posted and there is usually someone here who can answer any questions you might have

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi all!

    I had all my scans and bloods done.. all good! Hope the rest of you are doing well!

    Cheers,

    jackie.

    Ps I really hate what they have done to this site.. so hard to navigate

  • mamadetres
    mamadetres Member Posts: 15

    Just finished round two of this combo. I have great days and I have some pretty awful days. Most days I find it difficult to eat. My taste buds have completely changed. I used to drink 1-2 cups of coffee daily. I can't stand the taste anymore. I avoid anything spicy-that gave me horrible heartburn. Since I haven't been able to eat well, I've lost close to 15lbs. I am considered "morbidly obese", so I understand it's not a bad thing, but it's not the way I would have liked to lose.

    I've started journaling how I feel each day. I'm hopeful that it will encourage me to see the "feel great" days when I'm in the midst of a "feel awful" day.

    All-in-all, I think he coughing (I assume from my MPE), gagging/expelling clear, thick fluid, and the related loss of bladder control, is by far the hardest part of this process. I want to get a t-shirt made that says, "Cancer, not Covid!!" LOL!

  • actionaunt
    actionaunt Member Posts: 1

    Hi Jackie

    Totally agree about the website. I have tried logging in for weeks an it would not let me on my old registration so I have re-registered!!!

    I had a wonderful 7 weeks in the Caribbean and my husband managed while I was away. Within 24 hours of return it was back to his old needy routine. My consultant was delighted with the good effect the break had on my situation. Because I was able to rest and swim every day the unrelenting pain in my hip and right leg was completely gone. Sadly the pain has returned after having to physically support husband walking after my birthday outing when minicab did not turn up. So I am having acupuncture again to relieve the pain - it does help if you can find an experienced practitioner.

    Bloods improved now that I am taking iron supplements with Vit B12 and folic acid. Still taking lots of calcium and Vit D for my bones but CA-153 stable and my Palbociclib will be reduced from 125mg to 100mg in September. This shows that we can help ourselves. I am off to the Caribbean again at the end of September for another 7 week stay - Yippee!!

    Love to all on this forum - we are survivors - not giving in!!

  • Holiwoman
    Holiwoman Member Posts: 8

    Hi All,

    Just a quick update, my mothers 42 months scan came back stable. No metabolically active points. Festival season is kicking off in India, so she is looking forward to it.

  • mamadetres
    mamadetres Member Posts: 15

    Update:

    I had my first PET scan after starting Kisqali/Letrozole. I am happy to report great results!! Treatment is working. :)

    Many of the side effects I experienced have diminished/are gone. However, I am still steadily losing hair (oh how I miss a thick head of hair and eyebrows) and I do have dry patches of skin. Here's to three more months!

  • kanga_roo
    kanga_roo Member Posts: 302

    A big hello to everyone!

    My latest bloods are good and don’t have to have any scans till Jan next year!

    Hope you are all keeping well!

    Cheers, Jackie

  • kkcita
    kkcita Member Posts: 24

    I have been taking 600 mg Kisqali and letrozole since March 2020. Recently, my toenails started becoming discolored and one has fallen off two times now. One has a big space under it. I forgot to ask my oncologist last appointment. Has this happen to anyone else on this med ? also I have a lot of freckles on my face, especially after being in the sun. Anyone else? Thank you.

  • kanga_roo
    kanga_roo Member Posts: 302

    hi kkcita, no, haven’t had that problem, but some of my nails have ridges. I have heard the medication can make you sun sensitive, so slap on that sun burn cream👍

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