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

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Comments

  • snooky1954
    snooky1954 Member Posts: 850

    JOE7777

       Thank You. Thank You for your post about Hope. I'm so happy for you that you have an ONC who is so encouraging.   Unfortunately, mine is not like that.  Good thing though, she's retiring end of DEC.  so I'll be assigned to someone else.   Pat, told me to explain, nicely that I needed an Onc. who offered encouragement and hope.  And to continue on looking until I find one.   Good advice and that's exactly what I intend to do.  Bless you and your family.  Hope you're enjoying this Blessed Holiday Season.    Sue

  • tata_rosli
    tata_rosli Member Posts: 18

    I just realised I have not posted since July!

    Hi to the newcomers. I am on my 12th cycle on 400mg and femara at night. Last I posted was about the severe pain I had. I realised it had something to do when I delayed my Xgeva for bone mets. But my bone pain was also getting worst that Arcoxia was no longer working for me. So, since July, we were trying to find ways to manage my bone pain since cancer was stable.

    We did vertebroplasty to cement my cracked backbones but it didn't help with the pain. At least, I don't have to worry of broken bones or cord compressions for awhile. Then we experimented with pain meds. Some pain meds wasso bad that I couldn't even get up and have QoL. So, finally I am functioning on low dose morphine. And I am on it till today and maybe for long-term till the bones heal. Sometimes I don't realise that I have pain bcos of the morphine, and when I missed a dose, I regretted it so much cos the pain is just severe, it leaves me in tears. So, it masked the pain really well, and with no high feeling like an addict.

    I too have been losing hair since around cycle 8, and recently have problems with vision. I didn't realize vision is a common issue with this drug. I guess I should look into those glasses too. As for hair, yeah it drops but not as bad as chemo. Still have lots of hair but everytime I shower, I have to throw a big bunch of hair that clogs the drain. The fatigue has improved though I do limit myself from doing too much. Most of the time I feel normal.

    My CT scans have been showing that the bones are healing too, no new lesions but also no reduction. But my last tumour marker increased despite good scans. My next scanwas supposed to be tomorrow but I lost the paperwork, so it will be postponed. They also want to extend the scan to cover brain due to the increase in TM cos the prev scan only cover half body. Just in case to rule out cancer activities elsewhere. I hope there's no activities anywhere else and the rise was a false positive. Will do another tumour marker maybe after the scan if the scan still shows no progression.

    Anyway, Merry Christmas to everyone. Hope everyone is with their loved ones and in good health!


  • sherry35
    sherry35 Member Posts: 155

    Hello all,

    I hope everyone had a lovely holiday!

    Today's question involves me not being a very patient person. I've been told this is a slow starting drug, so in the meantime how do you know if it's working or not? How do you keep your mind from worrying that it's not working and things are just running rampant in your body? Grrrrr! I hate not knowing!


  • monarch777
    monarch777 Member Posts: 338

    Sherry, if you're talking about kisqali, it's faster acting than the Aromatase Inhibitors because it targets the cancer cells. When did You begin taking it. The AIs suppress estrogen which starves the the cancer cells. You won't know it's working except for scans and blood work. I know it's tough but hang in there. I knew how my treatment was working at my 4 month pet/ct scan. I had significant improvement. My last scan showed some improvement but everything was stable so I'm not on kisqali right now, just Femara. Smile Jo

  • sherry35
    sherry35 Member Posts: 155

    Thanks JoE777,

    I'm only on week 2 of my second cycle of Kisqali. Im familiar with AIs as I've been on them since original Dx. I will be having scans in about 6 weeks. MO said about half way through third cycle. Like I said I'm not patient and just struggling today.

  • monarch777
    monarch777 Member Posts: 338

    Heart

  • baywitch
    baywitch Member Posts: 63

    Sherry ... is your onc monitoring your tumor markers on a regular basis and are they true for you? I can tell you that after the first month of Kisqali my markers dropped from 750 to 250! After that it was about 50 a month or so. I would suspect it's working for you quite well. Good luck.

  • tata_rosli
    tata_rosli Member Posts: 18

    Sherry, I think before I got on the drugs I was in pain. But after starting, I felt good. I can lead almost a normal life, not toko fatigue like how I was during chemo, I could work and I could travel. I didn't know if it was working as everyone said, scans are only every 3 months but you know what, I didn't care.At least I am having quality of life and I am enjoying myself.

    I did tumour marker before starting and it was at 500+. after 3 months (yeah again 3 months but I guess you can do it earlier), it went down to 70+ then 60+ the next 3 months. Only the last tumour marker showed an increase 130, but scan was showing stable. Just had my CT yesterday and hoping the CT does not show any new lesions despite the rise in TM. Think will do TM again if CT results show stable or no progression.

    Hang in there! Enjoy yourself in the meantime.


  • Samuka
    Samuka Member Posts: 7

    Hello

    I'm very new to this forum and I'm still navigating my way around.

    Today is my 3rd day on kisqali. I'm also taking femara.

    I will post more and update my history and diagnosis and treatments as soon as I learn how.

    Ladies Im greatful to your posts and have found answers to some of my questions.

    Cheers



  • kanga_roo
    kanga_roo Member Posts: 302

    Welcome Samuka - hope all goes well for you..I am into my 11th cycle with good results. Where in Australia are you from? I’m a South Aussie - You may also find the “Aussie Sisters” thread useful too.

    Jackie

  • sherry35
    sherry35 Member Posts: 155

    Welcome Samuka, sorry you had to join us! I'm a relative newbie myself, I'm halfway through my second cycle. I found reading through the whole thread really helpful! I ask questions and everyone has been so helpful!

    Happy New Year to all

  • Operahouse
    Operahouse Member Posts: 44

    hello from Australia,

    I'm so glad to find this forum. This drug is so new that I couldn't find any feedback elsewhere.

    I'm on 12th day of this combo. I have been having upper back pain, burning sensation on my affected chest, tingles all over my body, no so much of nausea. I called my onc, he said all sounded normal. I'm concerned about the burning sensation and tingles. Has anybody experienced same symptoms? Next scan is still a while to go.

    Thanks in advance

  • kanga_roo
    kanga_roo Member Posts: 302

    Hi Operahouse, welcome to our little group! I’m assuming you are taking femara, which could account for the side effects you mention. Perhaps if you fill in more details we might be able to give you better feed back.

    Cheers,

    Jackie

  • Operahouse
    Operahouse Member Posts: 44

    Thanks kangaroo,

    I'm taking femara too. I actually thought my symptoms came from kisqali as I started femara two weeks ahead of kisqali and had no side effects. However it may take time for femara to kick in.

    I'm working on my profile now.

  • monarch777
    monarch777 Member Posts: 338

    Femara is slow acting compared to kisqali. I had the same SE among many others. Kisqali has many of the same so there you go. I'm currently off kisqali for almost 2 months and my appetite came back and other SE have lessened but it's hard for me to distinguish between medicine pain and cancer damage to nerves and bone. Are you metastatic

  • Operahouse
    Operahouse Member Posts: 44

    Thanks Joe,

    I was looking forward to my kisqali break. I'm not excited any more as I don't know if kisqali is the culprit.

    I updated my profile. I have Mets to my lung and liver. Hope my SE will ease up over time.

  • Operahouse
    Operahouse Member Posts: 44

    Thanks Joe,

    I was looking forward to my kisqali break. I'm not excited any more as I don't know if kisqali is the culprit.

    I updated my profile. I have Mets to my lung and liver. Hope my SE will ease up over time.

  • monarch777
    monarch777 Member Posts: 338

    Sorry for your troubles and anxiety that goes along with it. The good news is that, at least for me, after 8 cycles of kisqali, I'm on a break as long as I'm stable. Jo
  • Samuka
    Samuka Member Posts: 7

    Hello everyone and happy new year to all.

    Thank you sherry35 and kangaroo for welcoming me. Kangaroo I live on the other side of Australia on the Eastern Coast. More precisely NSW Mid North Coast at Nambucca Heads.

    Opera House looks like we started this combo at the same time. I think you started a day before me. I did feel some burning sensation but only mild.

    I'm on day 15 so far so good. I do struggle with diarrhoea. The second day on kisqali I had nause felt really crook but the next day I was fine. My hair has thinned out while on femara since July and now I'm loosing heaps. I worry that I will loose it all. I'm not looking forward to wearing a wig. Last time I wore it back in 2010 and my head was always hot itchy. I'm taking cannabidiol (CBD) oil once a day and that helps with pain so far. Samuka


  • sherry35
    sherry35 Member Posts: 155

    Well, 2 cycles finished. Last time, on my week off, I felt a lot better. This time I'm on day 5 of my week off and doing ok. I also have lymph nodes in my neck that are affected and they seem to be giving me some grief. As well as some acne issues. Has anyone else had experience with this?

    Sherry

  • monarch777
    monarch777 Member Posts: 338

    I lost a lot of hair with kisqali but about the 6th cycle it slowed. Never needed a wig. Are you on 600mg. I had to reduce to 400 mg on 3rd cycle because of low white blood count. Did much better with lower dose . I too blamed kisqali for many of my ills but since I'm off of it, several of my side effects is the disease or letrozole. I have MRIs tomorrow to see what my damage is. If you haven't checked with onc about CBD oil you need to just to make sure it doesn't effect the kisqali. The reason I haven't it's illegal in Texas but I will if my quality of life demands it. Good luck and give yourself some time. Hugs and peace. J

  • sherry35
    sherry35 Member Posts: 155

    Best of luck with your scans tomorrow JoE777! I will be thinking of you and praying for good results

  • monarch777
    monarch777 Member Posts: 338

    Thank you Sherry

  • Sary
    Sary Member Posts: 43

    Hello everyone... Thanks for the helpful insights. I have just finished the first cycle and overall it’s going well.

    Sherry - I am curious about your lymph nodes comment. My neck has been feeling really strange on one side - feels like lymph nodes are swollen and sometimes it feels like pain in my throat,ear or jaw. I’ve never heard of this as a side effect. What are your symptoms?

  • sherry35
    sherry35 Member Posts: 155

    Sary- my lymph node symptoms are not a side effect. They were actually biopsied to diagnose my recurrence. I have a mass in my neck which I'm told is in a lymph node. Some days it feels more swollen than others. My MO says that this tx plan will address all issues. Fingers crossed! I just have not heard of anyone else talking about lymph node issues so was curious

  • Sary
    Sary Member Posts: 43

    Thanks, Sherry. I guess I am just having a strange side effect!

  • Samuka
    Samuka Member Posts: 7

    Hi ladies

    Has any of you had metastic breast cancer to the ribs. Does it hurt? I'm in so much pain. I hope it's not because it's spreading rapidly. I'm not due for a scan for another 3 months.

    Samuka😊

  • monarch777
    monarch777 Member Posts: 338

    Samuka, what part of the bone is metastatic? I don't have any in the ribs but I have achiness with the medicine. The kicker is that these medicines can cause bone pain, particularly in the back. If you just had a scan I would think that you would have lit up in the rib. I know it's hard. Going through the same here.
  • Samuka
    Samuka Member Posts: 7

    Hi joE777

    I have about 7 in the ribs 1 in pelvic area and 1 in the back. It's the ribs at the front that hurts. 😀

  • monarch777
    monarch777 Member Posts: 338
    Samuka, sorry for late response, I lost my post yesterday just before I left for MRIs and felt yuky last night. Femara and kisqali can cause bone pain also. Do you take zometo infusions to help Strengthen bone. I've not heard of many people that didn't have bone pain once the metastasis reached a certain point. Don't be afraid to tell your doctor. Hang in there. Peace and hugs. Jo

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