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

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Comments

  • Parisalways
    Parisalways Member Posts: 23
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    Hi Tata Rossi,

    I found that dairy caused more diarrhea than my usual lactose intolerance. Imodium was the best medication for it.

    I too suffer from fatigue but haven’t found any solution for it. Early to bed.

    I am almost finished my 7th cycle and as previously stated I’ve experienced all the side effects possible! Hair loss is devastating and I’m thinking of buying a wig. 🤑

    My Onc told me that I will remain on the combo until it stops working. (Progression free) No mention of a trial end date.

    Hugs to all.

  • Lolis
    Lolis Member Posts: 294
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    Hi,

    I did not have a chance to ask my MO yesterday about what happens after the trial. That's a good thing to ask about what happens after the trial. An option would be to take Ibrance, right? I can't check with the insurance as Kisqali is not approved yet.

    Tata about the diarrhea try eating dry food just as rice, toast, plain pasta and I think banana too. Stay clear of milk and other dairy products. For the fatigue relax and try to sleep if you can. I haven't any issues with it. I just started cycle 4 and se have been minimal but my scalp is starting to hurt, just like it did when I was on chemo and hair started falling.

    My mass is now 0.4 mm down from 2.0cm as per the nurse but I want to check my last scan to confirm it. If it keeps like this then by the next scan there should be no mass left 😊

    Keep us posted on how do you feel.

    Hugs


  • EvaGor
    EvaGor Member Posts: 23
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    Well, my creatinine is back to normal but my GFR is still a bit low. Onc wants me to see a nephrologist, as I do have a family history of chronic kidney disease. Bummer. But at least I get to stay on Kisqali!

  • baywitch
    baywitch Member Posts: 63
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    Results today from CT and bone scans after 5 cycles - stable with some healing. Two new areas that could possibly be mets; too small to tell. So it's status quo on the meds. I'll take stable any day.

  • Mandy62
    Mandy62 Member Posts: 34
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    Hi

    Baywitch so good to hear such good results, it's worth all the side effects. Is thisyour first lot of scans. Are you on Xgeva injection monthly ?

  • baywitch
    baywitch Member Posts: 63
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    Hi Mandy ... this is my first set of scans after 5 cycles. I am taking 600 mg/daily - thought I might have to decrease the dose due to itching/rash, but last cycle it wasn't so bad. I have diffused mets just about everywhere in the bones. I get Zometa infusions once a month. No side effects from that at all. So far, so good.

    Kathy

  • Mandy62
    Mandy62 Member Posts: 34
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    Hi

    Kathy my oncologist told me my first scan might look a little messy because the Xgeva clings to the mets that were microscopic and couldn't be seen on the other scans. I was just hoping that this might be your case as the combo seems to be having such good results.

    I have dropped back to 400mg because of the rash . I have peeled skin of my legs arms,feet and hands. I went back on the 400mg after a fortnight off and day 1 I started to swell up and go red. I take an antihistamine and doubled it up and it started to settle. The last 4 days of my cycle I didn't need the antihistamine .I am hoping I am not as sensitive as I have been.

    I see my oncologist on Friday so I hope she lets me keep going , as the combo is like a life line to us stage 4 girls.

    Mandy

  • baywitch
    baywitch Member Posts: 63
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    Mandy ... My MO was happy with my scans, but I was a little discouraged when a couple more areas were spotted. Hoping your theory is correct and maybe they will be less noticeable next time. The itching is just a horrible SE from this combo, and is the only one I have experienced. I hope it calms down for you next cycle and you're able to continue. Looks like we were diagnosed/started therapy around the same time. Hope we can stay on it for years to come.

    Kathy

  • vazmutena
    vazmutena Member Posts: 17
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    Llolis and Baywitch - so happy for your good news, girls! Baywitch - maybe these new lesions are not "new" but they were not visible on the previous scan? Think about it! moreover this is a slow starter drug! Imagine what will be after 6 months!


    Parisalways - I am so embarrassed about this hair loss. Do you really think you will need a wig? My hair started falling from 2-3 weeks and I hoped it will stop but it continues. It's really devastating. I bought so many shampoos, serums, masks- nothing can stop it. And in the end my hair looks dry, curly, exhausted. When I touch it it stays in my hands. I talked with 2 oncologists and both of them told me that this is from letrozole and ot from ribociclib. But I do not agree with them because I have friend taking letrozole more than 5 years - no problem. I think that ribociclib is too new drug and the frequency of hair loss i still not really described (from the real life I mean). I hoped that it will stop. But if you need a wig...I know that it is most important that lesions are decreasing. Still somebody from this forum told that the problem is that we are very sensitive to everything that takes us away from the "normal" life.

    Lolis wrote that her y scalp is starting to hurt and now I feel tingling all over my scalp : )

    Lolis - where are you mets? 0,4 mm reduction for 4 months! Yeah! So happy for you! I have 8 metastases in the liver. the biggest ones were 11 mm and 9,5 mm. now after 8 months treatment (9 cycles?) I have decrease From 11 mm to 9,5 mm and from 9 mm to 6,5 mm.

    In Bulgaria we have only palbociclib and it costs more than 4300 EUR per 1 cycle. It will be marketed from May i think. But it has special precription status. Ribociclib is registered but it is still not marketed - maybe in 2019. What about your countries? May we buy ribociclib or palbociclib by the pharmacy (with a prescription, of course).


    Hugs girls

  • baywitch
    baywitch Member Posts: 63
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    Yes, I'm finding hair EVERYWHERE. I had so much to begin with I didn't give it too much thought. But it has definitely gotten much thinner and the texture has changed. Hope it slows down soon.

  • Lolis
    Lolis Member Posts: 294
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    Hi,

    I can't tell how much hair I have lost but I can see the difference in my eyebrow and eyelashes, which were the last ones to fall during chemo. The scalp tenderness has stopped and shows up only when I use an elastic band to tie my hair.

    Thank you Vazmutena. My met is in my sternum/internal mammary. It was a small mass of about 2cm so very small compared to others.

    How's the bone pains? I have noticed that my hips get achey if I sit for too long. I feel so old!!!! I need to start taking my magnesium/calcium/vit D again.

    Happy Friday.

    hugs

  • Idajakoc
    Idajakoc Member Posts: 71
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    Hello ladies!

    As for the hair loss you guys have been talking about: my hair are ok for now, they seem to be normal but eyebrows and eyelashes and other parts of the body I have seen reduction of hair.

    I also have been much more tired this cycle (5th), back pain and headache are everyday life now.

    But what bothers me most is my vision, it keeps being blurry and I have a hard time adjusting form light to darkness.

    @Lola I have been taking magnesium since the begining and it has helped a lot. I am starting to vit D soon too. My doctor was ok with it. But she recomanded no calcium because it causes nausea.

    Have a great and side effects free weekend!

    xoxo

    Ida.

  • blainejennifer
    blainejennifer Member Posts: 441
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    Ida,

    I'm not on your protocol, but have been through vision troubles recently. The symptoms you describe sound like cataracts. Our estrogen depletion, via various treatments, can radically hasten cataract formation.

    The blurriness you describe, along with the light/dark slow transition, are classic cataract symptoms. Others include haloing around bright lights, slow accommodative focus (like when you are switching from reading to a distance activity), poor night vision, and needing brighter light and high contrast text for reading.

    You should see an eye doctor to get checked out. It's a good idea for all of us on treatment for MBC to have a relationship with a good eye doctor, as I've learned that a lot of what we take for the cancer has an impact on our eyes.

    If you are near-sighted, chemotherapies can increase the risk of a retinal tear. Yup - I've had one already, and the eye doctor cheerily informed me that I'm at high risk for one in the other eye too. I was trying to do without cataract surgery, but have decided that life is funner when you can see clearly.

    Good times, huh? I hope your back pain and headache aren't too crazy bad, and that you get some relief, pronto.

    Take care,

    Jennifer

  • tata_rosli
    tata_rosli Member Posts: 18
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    Idajakoc, i was also feeling extremely fatigue and requested for hospital admission to recover. The IV drip helped so once I was discharged, I made sure I am well hydrated. When I was fatigue, I also had the headache. It seems to come as a package...

    I too had scalp tenderness when I put a tight scarf over my head. When I stop using something tight on my head, it is OK.

    I'm now on my 4th cycle. Do you all feel like the effect of the meds gets stronger after each cycle? Everytime I take the meds, I feel a fast rush of heat al the way to the head. I don't feel this on the 1 week off. Starting to feel more of the sensation like during chemo. But it is still better than chemo.

  • kanga_roo
    kanga_roo Member Posts: 302
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    Idajakoc and Tata, sorry you are feeling so tired. I am on my 3rd round of Kisqali and Femara - for me I think it is the Femara making me feel tired because I feel the same on my week off. I have been on Effexor, and think that is a contributor also. Good news for me today though, I saw my oncologist who had just got my latest CT scan results. There has been a 50% reduction in both my liver and breast cancer so the Kisqali is definitely working. Hope your side effects are only temporary




  • tata_rosli
    tata_rosli Member Posts: 18
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    good news kanga_roo!

    Always lift spirits high with news like this!

  • Idajakoc
    Idajakoc Member Posts: 71
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    Kanga_roo I am so happy for you!

    I have been on my best days these few days. I will se my oculist tomorrow! I am hoping for the best!

    Have a nice day!

  • vazmutena
    vazmutena Member Posts: 17
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    50% reduction! Kanga_roo! Only for 3 cycles! So happy for you! You give us so much hope, dear!

    I am also with liver mets but I have only "delicate" reduction after 9 cycles. The biggest ones: 1) reduced from 11 mm to 9,5 mm and 2) from 9 mm to 6,5 mm.

    This was after 6 cycles. Now, after 9 cycles - no further reduction.

    Girls, to be honest, I am also very tired. The fatigue is overwhelming. But I am trying to live at my max. I am working full day. And 2 months after the start of the study I started going to Zumba dances. Zumba helps me a lot : )

    Girls, I have planned incision of suspicious skin mole after 2 weeks. I am afraid because of my low neutrophiles. Did you experience some incisions/operations/surgeries? How did you bear them?


    Hugs girls!

  • Lolis
    Lolis Member Posts: 294
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    That' awesome news Kanga_roo!!!!

    Vazmutena good luck with your incision. I don' have any experience with surgeries but I am very interested in hearing more any experiences the other girls may have. I am thinking to have my recon surgery.

    Hugs

  • kanga_roo
    kanga_roo Member Posts: 302
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    Thanks for all the hugs and good wishes. I too feel very tired on this program, but I am also taking Effexor (37.5mg) so I am going to wean myself off it to see if it makes a difference. I’ve only been on them since January and such a small dose, I should be OK.

    It seems like we spend our lives waiting for our next test results. I’ve got to get a bone density test next, so hoping that will be OK. Ida, hope your tests bring you good news and Vazmutena with your mole. I have had a few moles biopsied and all were non malignant so hoping for good news for you too.

    It feels like life is a roller coast once you have BC diagnosis, but not as much fun.

    Big hugs to you all

    Jackie

  • Idajakoc
    Idajakoc Member Posts: 71
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    Hello ladies!

    I am officially on cycle 6. I had my blood check yesterday and it was the lowest my neutophile have ever been, 1.07. My doctor said I can go on for this month and then we will on may for the rest! And now I am scared 😏

  • Kirat11
    Kirat11 Member Posts: 7
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    I'm about to start my 3rd cycle, had my lab work done last week every thing was good but with noticeable downtrend on my WBC, when did you neutrophils started going down and are you taking anything to help it go up or stabilize

  • Lolis
    Lolis Member Posts: 294
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    Hi Ida,

    That's too bad. Are you going to be off for a couple of weeks? Is the MO going to let you continue the letrozole?

    Kirat- my WBC started going down the first cycle and they have been under 2 till now. The lowest I have been was 1.2 I believe. Perhaps exercising may help a bit and eating healthy. I don' think hat the WBC would be in a good range for as long as we are on this meds.

    Hugs.

  • Kirat11
    Kirat11 Member Posts: 7
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    Lolis

    My WBC was at 9 then 5.3 now at 4.7, neutrophils has not change much ao my oncologist is not too concern, i'm taking a lot of supplements obviously not sure which one is working.

    I'm about to start a new supplement for the WBC and see the effect on my WBC on my next lab test which is the last week of this month.

  • baywitch
    baywitch Member Posts: 63
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    Ladies .. getting ready to start cycle 7 of this combo. In looking at my blood work report, I don't see a number for neutrophil. I see a neutrophil% which is in the normal range. WBC's and RBC's are both low at 3 and have come down a bit every month since I started. Next blood work is tomorrow, so we'll see what happens..

  • EvaGor
    EvaGor Member Posts: 23
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    Had my first scan since being diagnosed with Stage 4 and I have to say I'm extremely disappointed Sad My markers kept going down, although not drastically, plus I was feeling GREAT. For the first time since finding out that I have BC I've been able to exercise, do house chores without any shortness of breath, etc. I assumed this meant that the cancer was being kicked in the butt. No progress... but no tumor shrinkage at all. I'm supposed to be happy, yet I'm not. I've learned my lesson - don't get too excited, cancer is a sneaky monster, and it can fool you.

    Sorry for the sad rant. I guess I'll feel better tomorrow, I need time. Just not used to this emotional carousel.

    On the bright side, my hemoglobin hit 12.0. I'm officially anemia free.

    vazmutena my neutrophils were low when I had my oophorectomy in March and all went well.

  • Idajakoc
    Idajakoc Member Posts: 71
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    hello Ladies I wont be off I am continuing like this because I have had a lot of ups and downs so they hope it will be upm besides they wont stop the medication till it goes 0.5. And my doctor doesnt agree on taking suplements! She believes wont help much. But I will wait and see how is it going to be on may 24.

    @evagor I am sorry you had no shrinkage. But I have had the same experience of being overwhelmed and my doctor put my feet on the ground when they told me: if there are no new masses it is the best news. So I was prepared for worst. Even this time I am prepared for that cos I cant afford another heartbreak😊

  • vazmutena
    vazmutena Member Posts: 17
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    Eheeee, EvaGor! Do not be disappointed! This is your first cycle? Yes? Only 3 months treatment? it is not usual to expect results after 3 months! Ribociclib is a "slow starter".

    I did not have regression after the first cycle (3x28 days).

    After my 2-nd cycle I had no regression according to Doctor 1 and 1-2 mm regression according to Doctor 2.

    After my 3rd cycle I had no regression according to Doctor 1 and 0-1 mm regression according to Dr 2.

    After my 4th cycle I have 1-2 mm regression according to Dr 1 and no regression according to Dr 2.

    You see? So we are stable! Like normal individuals! Stable! No ups and downs! I am thinking for this - why I want it to disappear? it is my own : ) It is better to re-educate it, to know how to behave, not to trouble its neighbors with its growth : ) But why do you struggle to disappear? Calm down! Your marker is down and your energy is back! ...

    I am very sad the last weeks because my hair - it is already so visible rare. And my self-confidence is gone. I know it is not the most important think - but you understand me perfectly well - it is not only about the hair. it is about us, about my condition to feel different from the others ... I started to be nervous, to yell at the children on occasion and without cause, to close myself in my shell. So this should be overcome! Everything is in our heads, really! Think for the moment when you wait for your results - you are just a ruin. And then, when we have good news, we are so strong, happy, full with energy : )

    So lets keep calm and strong. I know it sounds like cliche. But this is our real life - our family, children, friends...We should not be rude with them. We should enjoy every single day with them - from the meta diagnosis we celebrated the kids'birthday, my birthday, my husbands; one... we traveled so much...I am grateful to God! I am thankful for every single moment! I am normal and stable : ) Like you! I am living with it and it is mine, it is part of me...

    EvaGor - your results are perfect, believe me! And thank you for the info for the oophorectomy. But what is your neutrophile count?

    Hugs girls and excuse me for the off-label : )

    P.S.My mole is benignant.

    P.S. 2 Any experience with Vidatox? the Cuba scorpion venom?

  • Lolis
    Lolis Member Posts: 294
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    EvaGor - stable scan is good. As long as there is no progression it's good news and I believe it is cause for celebration!!! Many of us have had good results with this drug but keep in mind that each cancer is different and we react differently. and as Vazmutena said we should enjoy ourselves and be kind. Perhaps yours is a bit slower in reacting to this drug. I was a bit skeptical of the reduction in my mass as to me it appeared to be a bit too much too soon anyhoo. as long as we are pain free we should live our lives to the fullest!!!! we all understand your sadness and we are here for you. Hope you are feeling better.

    Vazmutena great news on your mole result!!

    I am leaving for Nice on Sunday.This is my first real vacation since my first diagnosis!!!

    Hugs to all.

    Lola

  • Parisalways
    Parisalways Member Posts: 23
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    Hi Lolis,

    So glad about your vacation to France! We’re booked for September. 4 days in Paris, then on to Provence. My Onc. Is aware and is going to work out my schedule to accommodate my trip.

    What is your plan for your drug regime while you are away?

    I would love to hear more about your plans! If you want to we can correspond separately via email. My address is,

    susanrobb590@gmail.com

    If not before your trip then after.

    Bon Voyage Mon Ami!

    Susan

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