KISQALI QUESTIONS

[SeattleMom]

Hello, pink band of sisters!

I started Kisqali 4 days ago. For those of you with experience taking this medication, would you mind sharing side effects and how you dealt with them?

Many thanks in advance!

Linda in Seattle

💗💗💗💗💗🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

[love2golfwell]

Dear Linda, although I am not on Kisqali I want to wish you the best of luck with this new treatment. I hope you are able to stay on it for a long time and do not have any side effects. Sending you hugs and prayers.

[SeattleMom in reply to love2golfwell]

Many thanks for your kind sentiments! God bless you! 💗💗🙏🏻🙏🏻

Linda

[love2golfwell in reply to SeattleMom]

You are welcome, Linda. May God bless you as well. Hugs

[Hazelgreen]

Hi Linda,

I've been on Kisqali (with letrozole) for well over a year. It is hard to know which side effects are caused by cancer, age or meds (I also take ramopril for my heart). I am 77 with a very enlarged right arm (cancer blew out a lymph node), very thin hair, fatigue, and some brain fog. I still manage a large house on my own (my husband died April 6th) so all is not lost.

My oncologist wants to take me off Kisqali, as he thinks there may have been progression in a lung. I'm resisting this (my cancer markers remain in the normal range), and seeking another opinion. Unbeknowst to him, I've always taken my ribociclib (Kisqali) and letrozole on a 5 days on/ 2 days off schedule so my neutrophils do not fall so low. Cheers, Cindy

[Guitarbella in reply to Hazelgreen]

Dear Cindy

So sorry to hear of the passing of your husband. Sending love & hugs. Xx

[Cowgirl1951 in reply to Hazelgreen]

Do you take 7 or 9 days off on week 4?

[Hazelgreen in reply to Cowgirl1951]

Hi Cowgirl1951,

Every week, I take ribociclib for 5 days, followed by two days off. I never take 7 or 9 days off.

Cheers, Cindy

[Cowgirl1951 in reply to Hazelgreen]

Cindy,

I admire that you do not take any additional days off. I wish that I could do that. I find in week 4 (during the 5/2 regiment) by day 2 that I am so fatigued I can hardly walk straight. Sometimes on the 7 days for 3 weeks I would need to take 2 weeks off because of neutropenia. I am going to try to close the window on the 5/2 regiment. I am on Kisqali 400mg. My onc said I could try Verzenio or elacestrant but I would like to stay on Kisqali if there is no progression. No guarantee that I would not have any side effects on those. Thank you very much for your reply.

Kay

[Hazelgreen in reply to Cowgirl1951]

I take Kisqali 600 mg. as I still had progression on the smaller dosages. I too started off on the full 3 weeks on schedule, but found I had to take two weeks off to allow my neutrophils to get above 1.00. I'm glad that Kisqali 400 is working for you. It is interesting that fatigue is a major problem for you in the 4th week, even on the 5 & 2 schedule! I'm going to look up some information I read recently which indicated that ribociclib may build up as it stays longer in the body. Perhaps your fatigue is related to the level in your body??? I'll let you know if I find anything useful...

Best Wishes, Cindy

[Cowgirl1951 in reply to Hazelgreen]

I discussed with my onc the Kisqali 5/2 schedule but she is hesitant to give any advice due to the 5/2 not being the trail run schedule. She would move to the next drug. Since I don't have to take two weeks off due to low neutrophils we agreed that I am maintaining more in my system on the 5/2 schedule. I need to clarify that my worst fatigue is week 3 and the last second day off Kisqali. Yesterday I started Kisqali round 9 but round 3 on 5/2 schedule . This time at the end of week 3 I will take extra two days off before restarting Kisqali to see if that is workable. It would be nice to have a way to measure the level in your body. I am open to any information on that.

If you find any information on how to measure the level in your body I am greatly open to that.

Thanks for the info.

Kay

[TammyCross in reply to Hazelgreen]

Update, please!

About to start Kisqali. Intimidated by the fatigue people complained about in this string. I took the full dose of Ibrance and the side effects weren't bad. On Verzenio, I had to go to the lowest dose and still fatigue made that a bad year (only a year!). From what I read about Kisqali, the lower doses are demonstrably less effective.

What did you find about it staying in body longer and whether the level is measurable?

[Hazelgreen in reply to TammyCross]

According to Google: "Ribociclib has a slight tendency to accumulate in the body. It is eliminated with an average biological half-life of 32 hours, mostly (69%) via the feces, but also (23%) via the urine." The Mayo Clinic site indicates that ribociclib interacts with a long list of other meds so you may want to check outthe list on the package insert.

According to Google, the answer to this question: "What are the methods of therapeutic drug monitoring (TDM)?" - " Quantitative testing for TDM may be performed by immunoassay, high performance liquid chromatography (HPLC), or mass spectrometry. Drug results that are reported as less than the assay cutoff should be interpreted as “not detected.”

[Hazelgreen in reply to Hazelgreen]

With a half-life of 32 hours, it seems to me that the "5 days on/2 days off" schedule should ensure that there is little overall accumulation in the body. Fatigue for us may be the result of our advanced aging and cancer rather than our meds.....

[TammyCross in reply to Hazelgreen]

Thanks, Cindy. No chance I will get those tests, but the half life -- is just the HALF life, right? Reduces the drug in your body by half. So getting rid of it altogether would take 5 days. I will be on the 3 weeks on, one week off schedule. Still, I like the sound of the 5 days/2 days schedule. She is starting me on 400, not the full dose, because my prolonged QTc is marginal, a bit high.

I also bleed easily and copiously. After a blood draw yesterday, the gauze was soaked through. One of my docs is worried about it because a PTT test showed I am slow to clot. The Kisqali precautions mentioned that one should not take aspirin, acetaminophen, etc. , if one has this tendency because Kisqali can slow clotting. I asked my onc about it because it included ibuprophen in the list. I didn't think it slowed clotting. She said she wasn't concerned. If she hasn't seen a side effect in her own patients, she tends to ignore it. She once told me I wasn't getting eczema from a medication because she had never seen that. I pointed out that studies showed 17% had that side effect. Finally, she acknowledged it, that she had seen it in a patient: me.

When I have had bad fatigue, she usually says it is cancer, and I think it is age. I have been off a CDK4/6 inhibitor for 2 months now, and just on exemastane. I wouldn't say the fatigue is gone altogether, but it is nowhere near what it was when I was on Verzenio for the last year, when it affected my life drastically. I think now I can tell the difference between tired because of my body and fatigued from medication. I think.

[Hazelgreen in reply to TammyCross]

Thanks, TammyCross, for reminding me about my long-ago chemistry lectures! You are very right that a half-life of 32 hours means that it takes time before Kisqali is totally out of one's system. David (my deceased husband) and I decided to assume that 3/4 (24/32) of the Kisqali was gone after 24 hours. When I took 600 mg daily, this resulted in a peak of 800 mg after 8 days. This peak was maintained as long as I took in 600 mg daily. If I took 400 mg daily, a peak of 533.3 was reached after 7 days, and maintained as long as I took in 400 mg.

The main issue is that we don't know how much Kisqali is needed to control cancer mutations. Even the original studies do not determine anything specific for individual participants not all of whom respond to the drug being tested!

[TammyCross in reply to Hazelgreen]

I have never told you I was sorry to hear about your losing David. This experience (I am trying to avoid "journey") is harder without a spouse -- on top of the heartbreak of losing one's companion. Another person on this board and I were thinking of doing a poll: how many have a partner, and are they supportive, freaked out, the balance of giving and needy? We mostly hear about the exemplary ones, who make it all easier, and sometimes about those who can't cope. I know of two who walked upon diagnosis.

My mind is not up to calculating the concentration of Kisqali on 400 mg, at least not today. And it so much depends on one's size. I would think mine would be on the high side, because there is less of me.

I did read one article that found that Kisqali is less effective at lower doses -- unlike Ibrance and Verzenio, for which the difference between max and minimum doses has not been established. Apparently, my oncologist has not seen that article, because she said what she said when she reduced my dosage of Verzenio: it works for you or it doesn't, and the dosage doesn't matter.

[jltorcz in reply to Hazelgreen]

I was very curious about that as well. Although having only 2 cycles of Ibrance, during the break week, I feel a little more tired. I wondered about the accumulation in the body. I am starting Kisqali on Wednesday and it probably works the same way.

[SeattleMom in reply to Hazelgreen]

Hi, Cindy,

Thank you for the kindness of your reply. My sincere condolences over the recent loss of your husband. Life is sure full of challenges and grief, isn't it? You are in my heart and prayers! XXOO Linda in Seattle

[Hazelgreen in reply to SeattleMom]

Thanks, Linda, for your very kind sentiments. Life is indeed full of "challenges and grief"! All we can do is be glad we can still function as well as we do...XXXOOO, Cindy

[SeattleMom in reply to Hazelgreen]

Cindy! Totally agree with your response to JMP. I feel EXACTLY the same way!

💗💗🙏🏻🙏🏻 Linda

[JMPhD in reply to Hazelgreen]

Hi, not telling the oncologist you’ve switched to 5 to 2 is dangerous. How can you and the Dr. really evaluate if Kisquali is working for you (or any other med), if you’re not having clear communication about your protocol, to consider reassessing meds? If you don’t trust the dr enough for an honest conversation, then you may need another oncologist. Worried for you!

[Hazelgreen in reply to JMPhD]

I don't share your view at all! You may have an oncologist who reads research journals. I do not. He simply follows his practice guidelines which are always much behind the latest studies. I am fully capable of understanding medical research so I am always up-to-date on the latest results. I've also been tracking my blood work and scans since this "adventure" began four years ago. In my case, cancer markers quickly tell me when progression happens. A telephone call with an oncologist every four months is not at all that useful. My view is simply that this is the only body I have, and it is clearly in my best interests to be as informed as I can be. I'm just another patient to my oncologist. Whether I live or die matters only to me.

[Bettybuckets]

Ho Linda- I also am just wanting to say hello and wishing you the best treatment run on this new drug. Change over is hard…scary anyway. So I hope a few ladies will tell you what to expect. And hope the new drug allows you to enjoy summer!

[SeattleMom in reply to Bettybuckets]

Thanks so much, Betty, for your kind message! You are a doll!

Linda 💗💗🙏🏻🙏🏻

[SeattleMom]

Found your comment about the 5-2 schedule so interesting! Started same routine yesterday! 👍👍

[Cowgirl1951]

Linda,

I wish you success on Kisqali. On Kisqali 600mg I had neutropenia. Dropped to Kisqali 400mg and still had neutropenia and had to take 2 weeks break. Now I am on my 2nd round of the Kisqali 400mg 5/2 schedule. I really get fatigue in week 4 on day 2 when I take days off. I wish I could take no days off but the fatigue is bad. I probably need to research what can help with neutropenia in order to go straight through treatment with no breaks on 5/2 schedule.

Beside the fatigue I have hair thinning and brain fog. I am 72 and try to shag dance once or twice a week. It's my passion. It takes me the next day to recuperate from dancing but it gets me out of the house and socializing. Sometimes I have lunch with friends and I can be too exhausted to eat but it gets me out of the house. I used to be very organized and detail about my house but that doesn't matter to me anymore. I just rest and try to socialize and be with friends.

Good luck on Kisqali and keep us updated on how you do. I am interested in how you feel on the 5/2 schedule and if you need to take any breaks.

Kay

[SeattleMom in reply to Cowgirl1951]

Hi, Kay!

Thanks so much for all your input! I am 74 and, like you, don’t take as much care about keeping my house in order. I admire your willingness to get out to dance and socialize. I find myself less and less interested in outside activity and more apt to read or stream TV. I live alone but have wonderful and supportive family members, particularly my daughter and twin sister. I have a had a lasting friendship with an ex-husband (strictly platonic) and a very close relationship with a son whose work and social life don’t provide for as much time together as I share with my daughter. But both are deeply adored. I guess I feel fulfilled with my family interactions and have probably let go of friendships due primarily to fatigue. I guess we all establish new priorities as a result of this disease.

I will definitely keep you posted on my Kisquali journey, Kay. God bless you! 🙏🏻🙏🏻💗💗

Linda

[Cowgirl1951 in reply to SeattleMom]

Yes Linda, I agree when we have our families in our lives it's harder to include others in our circle . . . . especially when we have less energy. I am blessed that my daughter and her husband decided to leave Sonoma County, CA and are living with me in Richmond, VA. She's my only child. We are all hoping to move to Knoxville, TN when we find the right house. They and two grand-dogs are with me in my apartment and there is not room for all of us but I love it. LOL.

Looking forward to hearing about your Kisqali journey and bless you.

Kay

[SeattleMom in reply to Cowgirl1951]

So happy for you, Kay! How did you guys choose Knoxville? My daughter and I visited Nashville a couple of years ago, and we loved that state. So beautiful!

I'll stay in touch! XXOO Linda

[Cowgirl1951 in reply to SeattleMom]

My son-in-law chose Knoxville due to no state income tax. Plus his boss moved outside of Nashville and another friend moved to Knoxville and they have encouraged his move to TN.