CDK4/6 inhibitors
If you have taken Ibrance or Kisqali or another CDK 4/6 inhibitor, I would appreciate hearing about your experience. I recently had to stop Verzenio because of unmanageable side effects. Oncologist wants me to consider an alternative in that drug class.
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I had taken Kisqali from late January until just recently, when I stopped. It was no longer working for me. I had side effects from it, but overall felt fine while I was taking it. I gradually had to reduce the dose because of low neutrophil levels. Other side effects for me were relatively mild - some nausea, a rash that came and went on my hand and neck (it disappeared on my weeks "off" from the kisqali), and I did get mouth sores but that was not a huge issue. I'm starting another medication combo next week.
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@cekmcc - I'm just wondering if you tried a dose reduction, or if you think it might be helpful for you. I've been on Verzenio over 4 years. The beginning was hard - extreme fatigue and gastro issues, which improved somewhat after 3-4 months. Dose reduction at 8 months really helped with both - especially bringing the gastro problems to manageable levels (with Imodium and simethicone).
Everyone is different. I know some people really can't tolerate it, but it's worth asking.
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I’ve been on Ibrance since 2016. My MO recently said it’s not the best of the CDK4/6 drugs, so he’s glad it’s kept me stable so long. I’ll be able to try one of the others in the future. The benefit of this one is most people don’t experience diarrhea
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@cekmcc, I am on my 12th cycle of kisqali with very few side effects. It has been very kind to me. My neutrophils range from mild neutropenia to very low normal levels. I seem to have escaped the fatigue that others report.
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cekmcc,
CDK inhibitors were not on the market when I was diagnosed with bone mets in 2011. I had a good run on anti-hormones until 2019. There was progression to the bones, so I was placed on Ibrance and a different anti-hormone. I took it for four months and it was terrible. There was more progression. Ibrance cost me thousands of dollars and it did not work.
My onc switched me to Verzenio by itself. For me, it was worse than Ibrance, even with a dose reduction. The white blood cell count was not the problem. I had diarrhea, nausea and gradually over the next nine months, my red blood cells lowered each month to where they did not come back up, and I was short of breath. I was dehydrated and anemic. I lost a lot of weight. Plus Verzenio did not work. More progression. My onc took me off the Verzenio thinking the red blood cells would come back on their own. They did not. I ended up in the ER and needed a blood transfusion. It worked and I started feeling better rather quickly.
My next treatment was oral chemo: Xeloda. I’ve been on it since 2020 and am now starting to have some progression that my onc and I are in the process of dealing with.Anyway, that’s my experience. I wish the best for you as you figure out your next steps.
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I am on my 19th cycle of Ibrance and Letrozole. I will be switching to foslodex next month because my side effects hot flushes, excessive sweat are becoming unmanageable again. Even with a strong antidepressant for mood swings I am still having to many issues.
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I’ve been on Ibrance and anastrozole for 5 yrs. Originally started on letrozole but had horrible joint pain and was switched to anastrozole. Started Ibrance at full strength (125mg) then dropped to 100mg and at 75mg for 3+ yrs. Have also had several breaks from Ibrance due to covid and 4 joint replacements. Still stable. Major side effect is fatigue and low absolute neutrophils.
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i am on Kisqali/letrozole. Just ended my 3rd cycle. The medication worked wonders on my mets, but I developed rash that is difficult to control. Looking forward to my week off. My doc will be looking at the dose reduction to 400 mg if my allergic reaction comes back. I don’t think there is a medication that doesn’t have SE.
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Don’t agree to palbociclib. Although 1st in the class to hit the market, the other 2 have better efficacy (although no clinical trials have studied them against each other).
That leaves you with ribociclib which just got an expanded indication from FDA earlier this week. It has pretty good data.
I was on abemaciclib with a couple dose reductions for 4 years but my CA 15-3 began creeping up during the last several months. That’s when my liver mets were found.
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hi @cekmcc , just recently I had to stop Verzenio because of liver toxicity. It was working well, PET/CT and MRI showed marked decrease in mets’ size and intake, but liver enzymes continued creeping up (last week test - 5x the max value). Since this is not the first time, there was no way around, but to discontinue.
My MO recommended to try ribociclib/ kisqali instead, once the values normalize. Fingers crossed it works.1 -
I was recently diagnosed with bone metastases and the treatment plan was kisqali with Faslodex. but after completing about two cycles I had to stop due to a large tumor in the tibia bone which put me on radiotherapy.
The main side effects of Kescali were severe stomach pain whenever I drank tea or coffee (It's like I swallowed a ball of fire). All this was controlled with Proton-pump inhibitors.
Another side effect was skin rashes with Severe irritation and itching on my face, belly and external genitalia and all this were controlled with creams and sunblock.
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I was on ibrance for 2 years and stable. I started prior to mastectomy with reduction in the initial tumor before it was removed. But I had to keep taking extra weeks off for neutropenia, even after many dose reductions. It got progressively worse each cycle. I was down to 18 days on and 10 days off on the lowest dosage for 2 months, but my ANC tanked. I took another break, and then started Verzenio on reduced dosage immediately (100mg). My ANC is now hovering around 1000, although in recent months is trending lower.
The gastro stuff is REAL. But I have figured out my routine- 2 imodium with my morning dose after using the restroom works well most of the time. You need to play around with that the first few weeks. The tummy troubles are actually my alarm to take the am meds now!!!
Edit to add, fatigue depends on ANC. The lower it goes, the more exhausted I am. And my Hair loss/thinning is much worse on Verzenio. I tried nutrafol, but it made me very sick with excruciating headaches starting the second day. I lasted one week in that. But that's just vanity, so I try not to worry much about it.
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i am on Kisqali/faslodex/xgeva . On November 4th i will end my 3rd cycle. The medication worked good on my mets, the side effects was manageable so far.
I developed rash on my face(on first cycle ) and cured by using sunblock, then came back on my chest, belly and genitals ( on second cycle) all cured by using cortisone cream, now I am on third cycle.
I also suffered from hair thinning but I don't know the reason. Definitely due to one of these three medications.
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I have been on Ibrance close to two years with few side effects. My hair is thinner and the texture is similar to African American women after being straight all my life. It looks awful when I do it so I’m going to the hair salon regularly. I’m also on Letrozole
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