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

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Comments

  • monarch777
    monarch777 Member Posts: 338

    I had lots of hair losshe first 5 months but now it's stopped. I had enough for three people. If been on monthly zometo infusions and letrozole since March and kisqali since April. All cause back pain, lethargy, fogginess, insomnia, joint and muscle ache, depression and anxiety for me. Thank God not all at once. When I began I was in a wheelchair and now I can walk and even go to the store. The doctor gave me celexa for the depression and creepy crawly feeling that was almost all the time. It worked. I had weak dose of hydrocordone for pain but don't need it anymore. My mets in lungs are cut in half and two disappeared. Mets in lower back shrunk and almost gone-I had 10 rad treatments in march for pain and tumors. Tumor pain stopped after first shot. I'm doing well enough now that I have as much hope as my oncologist. The side effects have lessened over the past months. When I began I was almost paralyzed. Hang in there. You're on the road to kicking butt!!!! Hugs and peace. Jo
  • monarch777
    monarch777 Member Posts: 338

    I had lots of hair losshe first 5 months but now it's stopped. I had enough for three people. If been on monthly zometo infusions and letrozole since March and kisqali since April. All cause back pain, lethargy, fogginess, insomnia, joint and muscle ache, depression and anxiety for me. Thank God not all at once. When I began I was in a wheelchair and now I can walk and even go to the store. The doctor gave me celexa for the depression and creepy crawly feeling that was almost all the time. It worked. I had weak dose of hydrocordone for pain but don't need it anymore. My mets in lungs are cut in half and two disappeared. Mets in lower back shrunk and almost gone-I had 10 rad treatments in march for pain and tumors. Tumor pain stopped after first shot. I'm doing well enough now that I have as much hope as my oncologist. The side effects have lessened over the past months. When I began I was almost paralyzed. Hang in there. You're on the road to kicking butt!!!! Hugs and peace. Jo

  • monarch777
    monarch777 Member Posts: 338

    I had lots of hair losshe first 5 months but now it's stopped. I had enough for three people. If been on monthly zometo infusions and letrozole since March and kisqali since April. All cause back pain, lethargy, fogginess, insomnia, joint and muscle ache, depression and anxiety for me. Thank God not all at once. When I began I was in a wheelchair and now I can walk and even go to the store. The doctor gave me celexa for the depression and creepy crawly feeling that was almost all the time. It worked. I had weak dose of hydrocordone for pain but don't need it anymore. My mets in lungs are cut in half and two disappeared. Mets in lower back shrunk and almost gone-I had 10 rad treatments in march for pain and tumors. Tumor pain stopped after first shot. I'm doing well enough now that I have as much hope as my oncologist. The side effects have lessened over the past months. When I began I was almost paralyzed. Hang in there. You're on the road to kicking butt!!!! Hugs and peace. Jo

  • baywitch
    baywitch Member Posts: 63

    I, too, had crazy fallout for several months. My very thick hair was everywhere, but seemed to thin mostly around my sides and front. I noticed at some point I stopped finding hair everywhere. At my last hair appointment, I was told I had about an inch regrowth, so maybe it's done now. The texture has certainly changed - it's now poker straight, whereas I had a bit of wave before.

    My worst side effect has been itching/rash. Benadryl helps, but on occasion I've been prescribed a round of steriods.

  • Tbelle
    Tbelle Member Posts: 4

    Thank you! Arrggh the itching!!! <3

  • Tbelle
    Tbelle Member Posts: 4

    Wow that is hopeful--thank you JoE <3

  • Idajakoc
    Idajakoc Member Posts: 71

    Hello Ladies!

    I had my fourth scan. Great result It is all stable. I am really happy to be honest cos I always stress out before the scan. So I am going to be strees free till one week before the other scan 🤣🤣.

    I hope you are having a great weekend!

    Love Ida.

  • monarch777
    monarch777 Member Posts: 338

    great news Ida. Now it's my tun. I have my scans Wednesday morning

  • vazmutena
    vazmutena Member Posts: 17

    Hiiii!!! Sooo nice New! Louis, Ida, Kangaroo, JoE777... Did I miss sb?

    Baywitch, any resukts about you? Sometimes marjer is increasing when you have massive tumor lysis. Hope this is the answer.

    Ida, how May tabl are you taking? I am alsobin a study and I am afraid that when the medicine is already on the marjer it Will be VERY DIFFICULT to take it. There are many criteria you have to fulfil... Bulgaria is the poorest country in the European Union... So Joe I decided to take 2 tabl instead of 3 and to keep 1 tabl personal Day Ford the end of the study. I consulted with oncologists abroad Who are experiensed with ribo. The told me that it Will be OK. I am 155 cm high, 50 kilos. I have always my neutrofiles around 1.0 So... I May afford it. Whar about you?...


  • monarch777
    monarch777 Member Posts: 338

    got my report Friday. "Somewhat improved and stable, no new activity " . nurse said I didn't have to come for consultation until my regular appointment next Wednesday. Then the doctor will go over details with me. Wish it had said SIGNIFICANTLY IMPROVED but it's still a decrease in disease and I've only been on kisqali since late April.

  • Idajakoc
    Idajakoc Member Posts: 71

    Hey there!

    Vazmutena I am taking 3 tablets a day of ribociclib and 1 of letrozol! And I believe if your doc say you will be fine dont stress about it.

    I thought it was already on the market in Bulgaria?!

    I am hoping it will stay a while like this until I figure something out, cos in Albania they dont even know this medication!

    Jo I am so happy for you!

    Byee oh and Happy Thanksgiving! We all have a lot to be greatful for!


  • monarch777
    monarch777 Member Posts: 338

    I'm so thankful for this international sisterhood on this American holiday. Wishing you all blessings and peace that surpasses all understanding HeartHug Jo

  • sherry35
    sherry35 Member Posts: 155

    Hello ladies! I can't tell you how helpful it has been to read through this thread!

    I was Dx with mets to lymph nodes in my neck and to my bones a little over a month ago. After 11 years from initial Dx and 9 since local recurrence I am still trying to wrap my head around it all.

    I've had one Zometa infusion, will have second one on Thursday and have been taking Kisqali/Letrozole combination for only 4 days.

    I have had such anxiety about everything and your posts have alleviated so much of that! Luckily I've had little side effects but know they may come and all seem pretty tolerable at most times.

    I'm happy to hear any advice or tips for newbies and wish you all the best on your journey.

    Cheers,

    Sherry

  • monarch777
    monarch777 Member Posts: 338

    Hi Sherry, sorry for your new troubles but you're on a good treatment plan. Are you taking 600 or 400 mg of kisqali? Wednesday I'll be taking my 11th infusion of zometo. I've been on the oral combo since April. Make sure you don't take anything unless your oncologist approves it. There is also a list of antibiotics that you shouldn't take in combination with Kisqali. I've had great success on this plan and I'm confident you will also. Hugs and peace.

    JoHeart

  • Mandy62
    Mandy62 Member Posts: 34

    Hello All

    I just had my 12 month scan and all is stable. Im very happy with the news, the scans make me stress so much.

    Sherry this is a great treatment plan and if you read the thread there has been good results.

    It is very hard to get your head around the diagnosis but things do get better,

    Thinking of you all

    Mandy

  • sherry35
    sherry35 Member Posts: 155

    JoE777 - thank you for the tips! I am on 600mg of Kisqali. Everything I've read here seems to be great in terms of results!

    Mandy- thank you for your kind words.

    How long do people stay on this treatment plan? Is it indefinite or different for everyone?

    Sherry

  • Idajakoc
    Idajakoc Member Posts: 71

    Hello girls!

    Sherry it will all be ok!

    That is a question I have asked a lot! But it is different for everyone and depends a lot on the scans! But the more you last on it the better, I have been told! And by time you will se you will just get better and wont mind being on medication at all!

    Have a great tiiime!

    Ida

  • monarch777
    monarch777 Member Posts: 338

    Has anyone gotten a break off kisqali

  • valeriagayle
    valeriagayle Member Posts: 9

    Hi friends,

    I’ve been on Kisqali/Femera since early April. Had a great scan in July. My last scan wasn’t so great. New lesions. My previous oncologist encouraged me to take two pills instead of one when the side effects became so intolerable. So during the month of November I took two. I moved and went to Paris. It was a busy month and I was glad to feel okay. End of the month I had a scan and new lesions. My new oncologist did more tests on the cancer itself and identified mutations that cause it to be resistant to anti- hormonal drugs. We’re back to being more aggressive. The plan is to go back to three pills then change to another drug after this cycle.

    Has anyone had this or heard of this? Has anyone had a bad scan but come back from it? I had hope. Now I’m feeling very discouraged. I’m still asymptotic. I’m blessed in so many ways. Just lost hope

  • baywitch
    baywitch Member Posts: 63

    So … made it to cycle 13.  Even though my markers have been slowly creeping up, my scans this week are stable!  Onc will rescan in a few months if the markers don't start moving in the right direction.  But I was happy with the outcome.  Maybe my nerves will finally settle down now for a while.  Hope everyone is doing well.

  • Mandy62
    Mandy62 Member Posts: 34

    Baywitch great news I'm so happy for you. I hope you will now have a peaceful Christmas . No more scans for a while.

    💕 Mandy

  • Lolis
    Lolis Member Posts: 294

    Congrats Baywitch!!!! Wishing you many more stable years!!!

    I have my scan tomorrow and I just passed my first anniversary of being re-diagnosed. Time flies!!!



  • sherry35
    sherry35 Member Posts: 155

    Hello all,

    So nice to hear all of this good news when I'm still so new to this! I just finished my first cycle, on day 3 of my week off. Luckily I have very minor side effects. I seem to have more side effects from the Zometa infusions.

    My questions today are:

    1. When did you start to feel better or more like yourself after starting this treatment?

    2. Although my mindset is changing for the better and my anxiety has lessened, I still have bad hours or crying spells. Please tell me this improves too. What do you do to not think about things? Any tips would be appreciated greatly.

    Thanks all,

    Sherry

  • monarch777
    monarch777 Member Posts: 338
    Hi Sherry, I've been on zometo infusions once a month since March. The first three times I had a lot of pelvic and back pain but I was so ill and having radiation to help with the pain. Now , there are a few days of flu like symptoms but manageabe. Be sure to drink 2-3 quarts of water those first days since it filters through the kidneys, and make water your firsthoice of drink to avoid UT infection. The infusions really build those bones and help in other ways. What dosage of kisqali are you on? Are you taking an Aromatase Inhibitor? All these will cause anxiety and I still cry sometime. Again, I was so ill, I was in bed for several months. But , I would say after about 5 months I've had a real turn around. I finally had to have an antidepressant and zanax on some occasions for panic attacks and anxiety, but that is better also. Don't be afraid to ask the doctor for help. Good luck and keep us in the loop. Your on the road to wellness.
  • Idajakoc
    Idajakoc Member Posts: 71

    Hello everyone!

    Valeria please dont lose hope! It will be ok! There a lot of other medications out there. One of them must be suitable for you! Please keep is updated! And I will be praying for you! Take good care of yourself!

    Sherry I know how you feel, been there. I started feeling like myself after the first scan! I started sleeping better. Thoughts I am not going to lie will be with you but you will get used to them and start to manage them and sometimes even make fun of your situation! And for the side effect as long as you figure out how and when to take your pills you will be fine with them. Try not to forget them.

    Baywatch I hope your markers stay right there!

    Lola how did it go?

    May everyone have a great week!

    Hugs

    Ida

  • sherry35
    sherry35 Member Posts: 155

    Hello all,

    Saw my MO today after first full cycle. Great news is my hemoglobin continues to go up- 102 today! I was very anemic in the summer- had one unit of packed cells transfused then. However my neutrophils have dropped which was expected. I was told they were around 1000 which is borderline area for continuing this dose. We are going to continue with 600 mg for another cycle and hope I don't drop anymore. Has anyone else dropped and taken a lower dose with success?

    Anxiety has reduced significantly after having heartfelt chats with both my mom and wonderful partner!

    I hope you are all having a great day.

    Cheers,

    Sherry

  • monarch777
    monarch777 Member Posts: 338

    Sherry, after my second cycle on 600 mg my white cell count was to low so I was moved to 400 mg and did great. I'm now on a break from kisqali because it looks like the femaramay manage the disease. Hang in there. It sounds like you're doing well.

  • sherry35
    sherry35 Member Posts: 155

    Thanks JoE777! May I ask how many cycles of Kisqali you did

  • monarch777
    monarch777 Member Posts: 338

    I did 8 cycles. I had good response from the first even though I had to lay off two weeks after cycle 2 and go to 400 mg. She told me the uptake in my lesions was so small it may be scars now. In January she'll measure tumor markers and order another pet/ct scan. I've even began to have hope. She has insisted I have years and even if my meds begin to fail there are new ones on the horizon. My doctor has always been right up front about my DX but has seen so much to hope for that I'm beginning to smile again. I feel blessed to live in the Houston area and have access to latest avenues of treatment.
  • monarch777
    monarch777 Member Posts: 338

    I apologize to everyone for multiple posts but there is a glitch on my end. Moderators haven't been able to help. I'll continue to try to delete. JoLoopy

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