Kisqali

[Cowgirl1951]

Is there anyone taking Kisqali and deviates from the three weeks on and one week off? By the end of the third week I am exhausted and I am off for two weeks due to low white blood count. I am on my fourth round and it is shrinking bone mets. Thank you for any recommendations.

[Hazelgreen]

Yes, I have been taking 600 mg of Kisqali for about a year now. Like you, I found the side effects harsh, and sometimes had to take a second week off due to low neutrophils.

After reading the research on a "5 days on & 2 days off" schedule for Ibrance mentioned by someone else on this site, I started taking Kisqali on the same schedule (unbeknownst to my oncologist who said that such a schedule might lead to treatment resistence when I mentioned it to him). I am now in my 16th week on this schedule, and it has greatly improved my life.

I keep close track of my bloodwork and CT scans. Since last October, my neutrophils have never been below 1.03, and my cancer markers recently dropped to the normal range (now at 18!). My January CT Scan was the most positive one yet - no growth, all tumours (spine, lungs, spleen, lymph nodes, liver, skin) stable! I have a telephone interview with my oncologist next week when I'll explain the reason for this improvement to him.

The fact is that a 5 & 2 schedule does not mean that there is much less cancer drug in your body. In a 28 day month, we take Kisqali for 21 days on a "3 weeks on / 1 week off" schedule and for 20 days in a 5 & 2 schedule. The big difference is that your body does not have to go through drug withdrawal for a week!

I actually calculated how much Kisqali was likely in my body under both schedules. Under the 3 & 1 week schedule, it looked to vary from a daily peak of 2175 mg to a low point of 387 mg. over the 28 days. Under the 5&2 days schedule, it peaked at 2113 with a low point of 1189. No wonder, I don't experience the dramatic swings in fatigue, etc. with this schedule.

Please note that I am not a physician, and this is just one person's experience. Your experience might be completely different. Please feel free to share this with your oncologist if you wish, or send me a personal message if you need more details. I haven't checked lately, but, perhaps, there now is a clinical trial looking at the 5 & 2 schedule with Kisqali since the research was originally done with Ibrance.

[Cowgirl1951 in reply to Hazelgreen]

Thank you greatly for your reply. I forgot to mention my 3rd round of Kisqali was dropped to 400mg plus having to take off 2 weeks due to low neutrophils. Therefore I am getting way less Kisqali over 5 weeks. If my body tolerates the 5 &2 schedule at 600mg I would logically think that to be better in stabilizing the cancer.I understand you are not a physician and this is your experience. I will discuss with my oncologist. I am so appreciative of all input. Thank you for responding.

[Hazelgreen in reply to Cowgirl1951]

Thanks for your thanks! I think you could easily use the 5 & 2 schedule with 400mg doses. In fact, I am now working towards taking only 400 mg doses as I'd like to reduce the side effects from the Kisqali. However, I want the tumours to stay stable so I'm going to cut back a bit, and wait to see what my next CT scan indicates.

By the way, I am 77 years old and all bodily processes have slowed down. I think my situation would be very different if I were 20 or 30 years younger (or worse, if premenopausal).

Regards, Cindy

[Hazelgreen]

By the way, if you add "5 days on schedule" to the Search HealthUnlocked button at the upper right of this page, you'll see earlier discussions of this topic, and the name of the other site participant who is on this schedule with Ibrance.

[Cowgirl1951 in reply to Hazelgreen]

I will look into that search. I am 71 but feel that I have aged 10 years. When I am feeling well I do Shag dancing. My dream is to go to SOS in Myrtle Beach, SC this year.

[Hazelgreen]

I too have definitely aged with cancer. Ten years in a year sounds about right. Thin hair, wan face, lumps & bumps, wrinkles, scrawny body - all giveaways regarding age!

I hate to tell you, but I don't even know what shag dancing is, or what is SOS?

[Cowgirl1951 in reply to Hazelgreen]

I hope this link works. This is shag dancing.m.facebook.com/story.php?st...

[Kruza]

I was on 3 weeks on ! week off but I was so exhausted and my white cell count was always low. I still have to work and it was hard so we changed it to 1 week on and 1 week off. My tumors have still been shrinking and I feel a little bit more energetic.

[Cowgirl1951 in reply to Kruza]

I am glad that regimen is working for you. I cannot imagine working and taking Kisqali. May God give you the energy to get thru this. Thank you for your schedule.

[jltorcz]

I know this is an old post but I wanted to make sure I understand that 5 days on and 2 days off is for the entire 28 days, with no week off after 3 weeks.

There are so few people on Kisqali on this site that have mentioned trying the different protocols that are being explored with the members using Ibrance.

[Cowgirl1951 in reply to jltorcz]

5 days on and 2 days off is for the entire 28 days, with no week off after 3 weeks. I couldn't do it though. I still had to take a week off. I ended up with inflammation of the lungs and had to discontinue Kisqali. I am on Orserdu now.

[jltorcz]

thanks for the response . Sorry it didn’t workout. I am still hoping I can continue on Kisqali.