Ribociclib/Kisqali with Letrozole - Any one on this combo?
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@bighubs thank for the info…will discuss with my Onc next week…also been having a lot of joint pain so maybe this will help that also
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@tougholdcrow thanks for the info….has it finally gone away
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is there anyone out there on just 1 pill and if so why were you reduceddon to one and how is it working for you
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@airlinegal i had to go on 1 pill for a couple of days because on cycle 4 I started having QT prolongation on 3 pills…I had to interrupt, took a longer break, then back on 2 pills for cycle 3, had to go to 1 pill because my heart was still not handling it well. My oncologist and I wanted to give 2 pills another chance and now I’m on it and it’s fine. I started cycle 7 on Monday.
I’m attaching the table from Novartis that has the guideline on my issue.
Cycle 1-3 had no heart issues. No idea why it started showing up on cycle 4. I was worried when the dose was reduced to 1 pill but I guess if they can do it then it works still.
Best of luck ❤️
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@radiation_cinderella thank you for the info…will see the doctor this Tuesday and hope we can work something out…I am not sure I can tolerate the 2 pills…not being a baby about it…can’t even function…Off week has started yesterday and today finally back to normal
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@airlinegal I think every body is different…My first two cycles on 3 pills were really difficult, but I was also at the beginning of my hormonal treatment and I was recovering from a back surgery…so it was too much on me. Cycle 3 was better but my heart started acting out on cycle 4 as I mentioned.
To be honest, for me, there’s a huge difference in how I feel between 3 & 2 pills. I didn’t feel a thing on 1 pill. 2 has been tolerable so far and I hope it continues this way.
Best of luck with your doctor, I’m sure you will reach something you’re comfortable with. May you get all the benefits from the drug and May it be kind on you <3
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I just finished my third round of Kisqali and my neutrophils have dropped yet again to .7, which means a delay in the next cycle. It's possible I may have to go down to 400. I got a mouth sore about a week ago, and thought, "uh-oh, white blood cell count must be low," and sure enough, it was. The weird thing is that I feel pretty darn strong right now, biking, swimming, walking, and enjoying life. My tumor markers are all in the normal range and continue to fall. So I think of Kisqali/letrozole as wonder drugs.
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@tougholdcrow, there are lots of posters who have had success with the lower dosage of Kisqali. I agree with you - truly wonder drugs. They have given me 11 months of very good quality of life. My tumour marker increased by one last blood work, but that may be normal bouncing around, the cold I have, or the probiotics I started to take last month. It is still well within normal range. We will see what the next labs say in 2 and a half weeks.
I am peeved at the cold because it has stopped me from going to the gym - working on the better to be safe than sorry principle. I have an immune system, but it is right on the bottom end of the normal range. I am guessing I caught the cold at the gym - a good many retired guys have decided to join the gym, all of a sudden. I am thinking they have been influenced by olympic fever and want to improve their physiques a little - lol. On the downside, they have no idea of gym etiquette - grrr.
In everybody's pockets for good news and a wonderful day.😀
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@malleemiss251 We are on a very similar trajectory (de novo, mets to bones, same treatment) and I sure hope we both stay strong for a long time. My GP told me not to go to the gym, but I go to a reformer pilates class twice a week. At least there, everyone (mostly women) is polite, wipes down all the machines, keeps distance, etc. I think I would feel wretched if I didn't do strengthening exercises. I hope your numbers mean nothing at all, and I am irritated that we have to stress over this every month. Here's to a glorious day, despite all. By the way, I went on a crazy adventure in Queensland once in my younger days. I will have to share it with you some time.
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Also De Novo Mets to bone. On Kisqali/Letrozole combo 9 months. I had to pause after first round for 12 days, then 400 for a month. Have been on 600 since then with minimal side effects . Oncologist said everyone’s bodies adjusts differently. I had a great scan after my month of 400. There has been good success with lower doses. Remember just because our journeys are different doesn’t mean they all can’t be successful in this battle. 🤗
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sorry but here I am again…first 2 wks were good…3rd week went completely down hill…on the week off having hot flashes thought maybe had Covid..went in Fri tested for Covid and lots of other viruses…nothing there…gave me saline bag..took bloodwork…platelets went from over 300 to 193..kidney 1.40 the highest..neutrophils low…will see Onc on Tuesday…she started me 3 wks ago 2 pills…I am not promoting Ibrance necessarily but it worked for 8 yrs on 75mg…going from a med that was 75mg to a med 400mg…would that not be a shock to your body…sorry I am so frustrated that I just want to cry. I understand I am not going to feel perfect on any cancer med…admire all who are on this journey and appreciate the comments
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@airlinegal so sorry you are having such a rough start on these meds. I hope your body adjusts and you get into a good rhythm. The good news is that if this drug doesn’t work out for you there are others that have worked better for some patients. Wishing you better days ahead.
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Thanks for your encouraging words, @dah925 . Glad you are here. @airlinegal You had such a great run on ibrance that I am sure this is a tough change. I hope you and your onc find a good solution.
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@tougholdcrow, my GP and onc were very much - "no Gym" for 11 months. My numbers are all on the very low side of normal, so they agreed to resistance training as long as I didn't take risks. I am not sure onc has forgiven me yet for saying no to denosumab. I have my reasons and they are rational, but I have no doubt it will be raised again in the future if my bone density reduces. Hence my push for resistance training - anything to keep my bones strong. I thought it best to take time off till cold resolved itself. I am a creature of routine and find it difficult to restart after stopping for a while. I am back to it today.
It is bizarre - after beginning the probiotics I felt dreadful, it might have been the cold or the probiotics - it has taken a month for me to feel back to normal. Onc definitely wasn't concerned about increase of ca15-3 - it went from 11 to 12. She was so unconcerned about them that she talked about not doing next scan until November - which would be 6 months between scans - my idea of heaven. Now all I have to do is to convince her to move to appointments every two months - lol. But I am feeling good now - I hope everybody has a wonderful day 😀
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Has anyone had radiation for bone mets? I had an appointment with radiologist today and they are recommending radiation for my single bone met. I am very nervous about radiation and don’t know if I should wait because the drug combo has so far kept it under control. Any input would be greatly appreciated. Thank you.
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@dah925 I had radiation to a 1.3cm lesion on my pelvis in Jan. of this year. Do you know anything about the protocol they are proposing or what their goal is? Sometimes radiation is done for pain relief. Mine was 3 sessions of SBRT done on a single met that popped up after almost 2 years on Kisqali. The hope was that this oligoprogression could be treated and nothing more would show up so I could continue on Kisqali. I've had 2 clear PET scans since the radiation and it appears to have worked, giving me more time on this treatment.
The radiation itself was a piece of cake. One mapping session, 3 short sessions of radiation. I was fortunate that the lesion was on the crest of my pelvis so there was no collateral damage. I had no skin issues and no fatigue, just lots of stress worrying about my progression and if the radiation would work!
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Thank you so much! They are proposing 3 sessions SBRT after mapping session and MRI. Lesion is 1 cm. It is T4 so close to lungs and esophagus. I am being told very low risk. I have some pain but it is very manageable. Goal is to ablate so I will only have breast tumor. The breast tumor is not an option for surgery since already metastatic and also abutting chest wall. I am trying to decide if I should wait to see if it gets bigger or get radiation now. Thanks again - your information is very helpful.
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I have been on Ribociclib since March 2021 and have been stable.
My white blood count has gone down but always only just under normal but suddenly in the past few days I have been freezing and very tired and today it was so bad I thought I might have to pull the car over as I thought I was going to fall asleep.
I have spent much time in bed over the past three days and still feel tired.
I am going to contact the oncology team tomorrow as I would say I am neutropenic.
I am wondering has anyone else white blood counts suddenly got worse after years of being on Ribociclib.
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@dah925 I had 5 doses of radiation to my neck / cervical area back in April (can’t remember the specific vertebrae). I thought I’d tough my way through it with few side effects but I did get a sore throat the week after radiation ended. It was a bit of a delayed reaction. Food also tasted terrible for a bit. Since your radiation is close to your esophagus I wonder if you’ll experience anything similar. Consider smoothies and milkshakes if your throat gets sore. Fatigue kind of hit me a couple of weeks after the radiation ended too, but it didn’t take long to bounce back.
I’ve been reduced to one pill per day of the kisqali for a couple of months now, due to low neutrophils. My latest CT scan shows that bone lesions have stopped in their tracks, which is good. But my breast tumour and the tumours on my liver have grown. Not so good. I have a medical oncologist appointment September 4, so I’ll post any updates to my treatment and meds.0 -
@doodler Thank you for sharing it is very helpful to know what to expect. Do they know what caused your neutrophils to drop? I hope they go up so you can increase your Kisqali dosage. Best of luck at your appointment.
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@sunnydays I have only been on Kisqali for 10 months but did have low neutrophils one month and they bounced back. Here’s hoping you bounce back quick.
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I'm officially off kisqali now. The 200 mg/day has stopped working. A recent CT scan showed bone mets as stable, but liver mets grown and multiplying. ALP and ALT jumped up sharply on this morning's bloodwork.
MO said to stay off the kisqali (it was my week "off"). He'll go over a new treatment plan with me Wednesday.
Just around 7 months on the kisqali, in total. Well, we tried it.
Onto the next medication combo…
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@doodler. Sorry to hear that the Kisqali is not working for. There are other drugs and I believe they will find the right one that works for you. Wishing you the best.
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Wellllll…..gotta go off Verzenio too. My liver enzymes are on the rise again. Only was able to get through two weeks. Not sure what next step is, but sure wish I could tolerate the CDK's.
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I just started kisqali and faslodex last month. I have stomach issues, diarrhea off and on fatigue and I feel crummy too. I’m on my week off kisqali right now and I’m not feeling much better. I did go through a lumpectomy with chemotherapy and radiation 2 years ago.
this new treatment is really taking a lot out of me. I’m trying to stay positive.0 -
@starbrightlyshines It took me a while for my body to get into a rhythm on the Kisqali. I now have very few sides effects. 🙏The same for you.
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maldivamd, Just to say I found the initial 600mg kisqali dose hard to tolerate - neutrofils very low - but after a break, onc. reduced dosage to 400mg which neutrofils seem to be tolerating. Cancer markers are finally dropping. Keep the heart up, hopefully you will begin to feel and seen an improvement soon or onc might decide to reduce your dosage which may help you tolerate it better. I still am much more fatigued than before I started on Kisqali but I'm hopeful.
I'm on a combination of Kisqali, Faslodex and Femara (and Zometa periodically). Is anyone else on this combination? My problem is that I've been losing weight since I started Kisqali - about 22 lbs in 5 months. My tummy is constantly bubbling and burbling and I'm full of wind. I haven't changed my diet or walks, in fact I'm walking far more slowly these days. I don't know if this is coincidentlly some new cancer symptom or an interaction between my meds. My onc has been ignoring the weight loss, concentrating on the dropping markers. Anyone any ideas, suggestions or advice please?
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I am on kisqali, a bone infusion and an estrogen blocking infusion. So far that’s all. I see my oncologist on Thursday after my hormone blocking infusion. I have lost 5 pounds this week. I’m trying to stay focused on this fight. Hopefully it’s working. I don’t get another PET scan for 2 more months. And my hair is starting to fall out again. I just pray they can find the right treatment to keep me alive and feeling like i did before this treatment started.
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I am on Kisqali 600 mg and Letrozole for 11 months . I take meds in the morning with a half a plain bagel and eat small meals every couple of hours. This has worked for me. Hope it helps.
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