Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Diagnosed with BC left side in August 2015, bilateral mastectomy by choice, no chemo. Met to my liver/spleen in December 2017. Feco/CBD daily since December 2017. Paclitaxel for 4 1/2 months. In May 2018, stopped chemo, and radically changed diet to all fruit/veggie. Scans show continued improvement under "my own steam". Had a Petscan in February 2019 which showed continued improvement in Liver/spleen. However, tumours are now in 3 spots in my internal mammary lymph nodes, 3 spots on my cervical/thoracic, 1 on my hip, and 1 on my pelvis. I started Femara a month ago, and started Ribciclib (once/daily) last week. This week, I added a 2nd dose to my day. If all goes well, I will add a 3rd tablet next week. So far, I seem to be tolerating it. My stomach is a little uneasy (vomited yesterday), but I think it was because I had too much liquid in my system after taking multivitamins, and then got in the car (crunching my liver). My whole day seems to be spent trying to incorporate food, drugs and exercise without getting sick, and maintaining good energy.
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Hi Surfdawnpat,
Hope the combo works well for you. It does take a while for your system to get used to it. I started with the 600mil, and after 4 months i was still feeling lethargic and nauseous. My onc reduced my dose to 400 and I have been fine with that. My side FX are mainly from the femara now, hot flashes, aches, and a bit of lethargy, but nothing I cant cope with.
All the best’Jackie
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Hello
I was on Ibrance + letrozole for 3 months and developed a bad rash ,and has to stop Ibrance because of this side effects.
My oncologist now put me on ribociclib witch I started a week ago,I am now in my second week ,and I have headache when I take it , when I eat something it goes away .
I have been told it my trigger the same rashes .
Does someone experiencing these issues ?
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Surfdawnpatrol: I really hope this combo works for you. It takes a while to adjust to the medication. I am on my 18th cicle and it is like a work trying to maintain the balances.
Laframa: good luck! I really hope it works for you. I have the same thing with the head ache! But thrre are days you are going to feel it there sill be days you wont. And sa per rash. I had a few problems but really small stuff. Nothing I couldnt take.
Best of luck both of you
Hugs Ida
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I am only at the second week of my first cycle,it seems the rash it’s coming back, I should see my oncologist la April, will see what will be the outcomes
For some reason Novartis is sendings me Kisqali to my home directly ,and so their pharmacist are calling me to discuss the side effect and I also to ask me to have EKG .So for 2 monts I will have an EKG ,before starting the cycle .Wonder if it is the same for everyone who’s starting Kisqali.I feel like a Guinea pig. I compared Kisqali vs Ibrance it seems Kisqali didn’t have as much trial and study as Ibrance did.
Thanks Ida
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Laframa the EKG is normal for the first two months. I did the same and a lot of people I know that are in this cure. What I like about Kisqali is that even in reduced dosage (less side effects) does a lot of work. I had to search what Guinea pig is 🙈🙈. I feel you. I feel swollen and lazy in the morning also. But if you get yourself moving kind of goes away. I started a swimming lesson a couple of months ago. And it has really helped me.
Feel free to share anything you find strange. We might have had it for sure.
Take care!
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As Ida said the ECG is normal the first couple of months as they want to make sure that the heart is not having any issues as Kisqali affects the heart.
keep track of the side effects and report them to your medical team. I found the first 3-4 months had more side effects and then the body adjusted fine. now my side effects are mostly from Zoladex and letrozole.
I am on the 16th cycle now and waiting for confirmation of my recon surgery. I hoping BC stays dormant and doesn't cause any more issues!!!! I have been waiting 4 years for this surgery (for other reasons too but I was supposed to have this surgery in 2018).
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Hi Laframa, I’m on my 14th cycle, and every so often get an itchy rash. I take an antihistamine (telfast) and that seems to sort it out. I have had this OKd by my onc. I agree with the other comments, it takes a few months to settle into the medication and work out what the side FX are. Letrozole also has side FX.
Also, I notice in your bio you were on Palbociclib - I was wondering why your onc changed your medication so soon.
Cheers,
Jackie
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Lola I am happy for you to have that surgery! I wish you Godspeed (in my mother language sounds much better 🙈)
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I have a couple questions about Kisqali that I'm hoping to get some feedback on:
1. Why do the instructions state "preferably in the morning" for taking the drug? I asked the onc office and they just shrugged. I've Googled extensively and can not find a reason why. I'm suffering significant GI issues on this drug and am wondering if taking it at bedtime would be better.
2. Why are we told not to even TOUCH the pills? How do you manage that? I started by popping the pill from the blister pack directly into a dosing cup and tossing it back into my mouth but now I'm just touching the pills. They have a coating so ???
I only made it 2 weeks on 600 mg before my ANC tanked (< 1), took a week break and my ANC dropped further (<0.5). Took another week off along with daily Neupogen shots (for 3 days). Now on my second week at 400 mg with weekly blood checks. Fingers crossed.
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Hi Leydi, initially I was on a Kisqali trial and I asked that question about dose time, and they told me it didn’t really matter as long as I took it at the same time every day. I prefer to take it at night as I manage to sleep through any side FX.
I wasn’t aware of the “don’t touch” instruction. I just pop them out of the blister and take them.
Many of us have found the 600 too strong and have dropped back to a lower dose and find it still does the job.
Hope everything works out for you.
Cheers,
Jackie.
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Hi Jackie,
yes I was on palbociclib for 3 cycle , I was fine on it except the rash t developed and the unbearable itching, she send me to see a dermatologist, I end up with a cortisone cream ,it work , but not itching as it use to be I should say. That’s why the oncologist change me for the ribociclib
Just hoping this one will work for me
Best regards
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Hi Ida
Sorry for the expression (guinea pig) meaning I fell I am in trial with Kisqali ,because they have less study than Ibrance
Best reg
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Hi from Denmark 😊
I'm on my 5. cycle of Ribociclib/Letrozole. I was diagnosed stage IV nov. 18. Mets to liver (and maybe a few spots on spine - the PET/CT says no, MRI says yes). I also get Goserilin and Denusumab once every 4 weeks.
So far I'm doing ok on this combo, it's pretty mild, nothing compared to real chemo, I think. So far my only side effects are tiredness, joint pain, mild headache and a rash on my hands/arms, but the rash is taken care of by antihistamines. So far my blood counts are pretty fine, still on 100 % Ribociclib.
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Hi Leydi and everyone,
I too was told not to handle the pills with my bare hands but to use a glove.
How long have you been on this combo? And are you on 600 mg?
I'd like to take mine at night also but the instructions say, like you said, preferably in the morning. Are you going to switch to night?
Has anyone noticed a sore throat on this combo?
Thanks!!
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Hope1018
I’m on my 5. cycle, and yes, still having 600 mg daily. My blood counts are pretty fine - had my last this thursday and they were better than last month. I take my Kisquali at dinner time. The first month I took them in the morning, but my stomach didn’t like that, so my onkologist told me to take them at dinner time.
No sore throat, but fatigue, rash and a tiny headache
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Laframa dont worry about it! i just didnt get it.
Hope I have sore throat but mostly when my imunity is pretty low.
By the way. I was told preferable 1 or 2 hours after breakfast. I wasnt told not to touch them. But they said it would be better to keep them in their container and not use others.
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Thank you, Hjertemor
Do you also take letrolzole or xgeva or lupron?
Are you working? I've noticed that most of the people on this thread are not from the United States. I live in the US. It's great to meet people from different countries!!
Everyone over here is on Ibrance mostly. How long has Kisqali been approved over there?
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Hi Hope
Kisquali has been approved in Denmark since late 2017. Yes, I take Letrozole too. Every 4 weeks I have a shot of Xgeva and Goserilin (Zoladex) because I was before menopause at the time of my diagnosis.
I just quit my job - I want to live life to the fullest for the rest of my time 😁 I have a great pension plan with a fine disability pay - this plus the public sickness pay, which we luckily have i Denmark 🙏🏻 - gives me pretty much the same income as I've had workning full time as a lawyer.
I hope to have my two relatively small liver mets RF'd some time soon. This tuesday I'm having MRI to make sure that there are just those two bastards in my liver, and if they don't find any others, the liver surgents have agreed to perform RF. I'm holding my breath and hope the MRI shows no bad surprises 🙏🏻
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Good luck on your MRI!! What is public sick pay? I've never heard of anything like that.
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Hope, in Denmark we have (probably) the world’s best social security. If we get sick, our employer gets public refund for (a part of) the employee’s salary. If not employed, we get the same amount in sick pay. The amount is $ 2,880 per month in 2019. When diagnosed stage IV, the payment is for life. On top of this I have my own pension plan which pays out almost $ 45,000 p.a.
Yes, we DO pay a relatively high tax 😀 - nearly 50 %. But we do have an excellent social security and free health care. I do not pay for anything regarding my breast cancer. And no - we are NOT communists 😂
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Hjertemor,
I have heard that Denmark has excellent healthcare, as I'm sure you've heard the US does not.
I think the most anyone can get from Social Security is $2000, regardless of how much they make during there life time.
I pay around 27% in taxes. Our insurance plan costs almost $500 a month with a $2500 deductible and 10% coinsurance until the $7000 out of pocket is met. Then I'm covered at 100% until the next calendar year. I would have to quit my job and be unemployed for 5 months before social security would pay anything. Our system is so broken!!
I don't think you guys are communist at all.
Our current president is trying to do away with the law that requires insurance companies to cover preexisting conditions. That's horrendous to me.
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I was never told not to touch the pill, Always did. My written instructions never directed that. Manufacturers are covering all their possible bases. You're putting the pill in your mouth.
I was on 600 for two cycles then reduced to 400, did ok on them.
Always took mine at 5 pm because of side effects. You do how you can take it
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Thanks for the info, Joe. Are you not taking them now? If not, what are you taking?
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I've been on a break since December. Waiting for my pet scan report right now to see if Femara is holding the line. Hope so but it's like waiting for the diagnosis the first time. Glued to my cell
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I hope Femara is doing wonders all on it's own!! Will you be able to go back on Kisqali if needed?
All of us are waiting with you. You are not alone.
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Hello all,
I've been laying low for a little while trying to digest more news and waiting for more results. When I got sick last year it started with gastro issues, low hemoglobin and fatigue. Other things added into the mix until I was eventually diagnosed with recurrence. The gastro issues never resolved. After my last set of scans my MO said he could see nothing to be causing the issues from an oncology point of view and to contact my GI doctor. So I did and had an endoscopy scope done. He shared some pics with me, prescribed a med which he said would coat my stomach and said he took some biopsies. So my mind goes immediately to cancer and I ask him about the biopsies and he says it could be an infection or you do have a couple abdominal lymph nodes involved and given your history it could be cancer. He says his secretary will call me for follow up appointment. So it turns out the meds he gave me are to try and heal ulcers. He never told me I had ulcers but I heard the nurse say something about it. His secretary called me the next day and said he wanted my follow up in 1-2 months. They don't seem too concerned but it's put me into a bit of a tail spin as I was not expecting cancer to come up. Ugh! I hate being in my head sometimes!
Thanks for listening!
Sherry
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Just got my phone call from my oncologist. My pet/ct showed no uptake or activity-stable. Ct showed the avascular necrosis in the hips which was discovered last month with an MRI. No kisqali unless disease becomes active. Femara is holding the line for now. Mixed feelings of relief, gratitude and nagging anxiety which lurks in the back of my mind. I know tomorrow will be a new experience in trying to live one day at a time.
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Congrats, Joe!! So happy for you. One day at a time sounds like a good plan to me.
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Oh wow JoE! That is the best news! You give the rest of us hope! I’m doing a happy dance for you!💃🏻💃🏻
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