Anyone taking cyclin-dependent kinase (CDK) 4/6 inhibitors?
I am a very active 72 and have been in very good health (other than osteoporosis) until the diagnose of stage III ICL end of last year. I have been taking Anastrozole for the last 10 months and am having increased joint stillness. I had a lumpectomy and am going through radiation therapy. CDK 4/5 inhibitors are on the table. I am not sure of the side effects and benefits for ILC cases like me.
Can you say how old you are are what was your diagnosis?
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I have been on Ibrance and letrozole for nine years now. The only side effect that I have had since the outset has been loose stools in the morning. I vaguely remember having fatigue when I started, but even at age 81, have a good energy level. My initial dosage of Ibrance was 125 mg, but it was gradually reduced down to 75 mg within about a year because of neutropenia. I wish you the best with your decision. Wonder if a second opinion would help?
I am 40 years old, have been on Verzenio (abemaciclib) for over 2 years. My diagnosis was initially stage 4, so they opted out of anything like surgery/chemo. I would have opted out of those as well had they been presented, I never wanted a treatment worse than a disease. I only agreed to any treatment because of it being a targeted therapy, pill form for ease, I was told it was nothing like chemo. Upon my diagnoses everyone was so doom and gloom like I was about to die any moment, I figured it wouldn't do much, if anything to help but it shrank my tumor away in less than a year and has prevented further spread. I have to take it with food or I get sick to my stomach for hours and hours. I have had severe changes to my skin, hair, nails, my hair is half of what it was, grows in almost dead looking and very slowly. I can't have long hair or nails anymore. My nails break and split all the time and I have to lather myself in creams to not be flaking off. I have very low blood counts perpetually, fatigue and my dr warned me that between this and the hormone blockers, I am at a very increased risk of blood clots.
It has promise though to reduce cancer cells for others as well, so it's likely worth trying for anyone who really wants to live longer and possibly shrink tumors enough to avoid surgery or maybe have lumpectomy instead of mastectomy. I still have cells in my bones but it does seem to be doing a lot for the cells in other areas.
For reference I have er+, her2-. I am also treated with fully depleting my body of estrogen, shut down ovaries, take ai and bisphosphonates for bone mets. Between all the treatments, its debatable if the treatment still ended up worse than the disease but it's also different for everyone and anyone who wants to live or has a reason to live, I still would recommend them trying CDK4/6 inhibitor like verzenio. I don't know about taking to prevent cancer, I personally wouldn't but I already know my side effects. Someone else may not have the same ones as me. I hope this helps someone to make a more informed decision. Doctors tend to just focus on glossing over side effects and just hope you won't have them.
I had a recurrence on my chest wall 2 weeks after a mastectomy. I then had chemotherapy and 2 suroto get the tumor out with clear margins. I am on letrozole (7-10 yrs) and just finished 2 yrs of Verzenio. My doctor said without those drugs the chance of stage 4 cancer was 70%. Letrozole reduces the risk to 35% and Verzenio takes off another 7%. The risk of stage 4 is lowered a lot. And verzenio keeps working to reduce the division of cancer cells after you stop taking it. Vwrzenio is the biggest breakthrough is BC in 20 years. Although it’s expensive $144,000 for 2 yrs. .
What was the dosage of Verzenio that you took for 2 year? Any side effects?
150 mg twice a day. Two pills a day (morning and night). Side effects of Verzenio were diarrhea for the first few weeks, neutropenia, and hair thinning. If your neutrophils go below 1.0 the protocol is a drug holiday and then dose reduction. Eating dark chocolate 1-2 hrs prior to lab work will push the neutrophil count up.
Hello - these decisions can be so hard! I am 55, diagnosed 1 year ago with stage 3 IDC, with 3 tumors on one side and 6 lymph nodes involved. ER/PR+, HER2-. It turned out one of the tumors was ILC. Had a lumpectomy and full lymph node dissection. Followed by 3 weeks radiation. I am on Letrozole for hormone suppression for 5-10 years, got 4 Zoladex shots over the year to shut down ovaries. In February I started Verzenio, 150 mg twice daily. (This med, for me, in MN is $18,600/mo! My copay is $705/mo, but the manufacturer, Lily, has a copay program, so I pay 0, thankfully). My fatigue and brain fog is INTENSE. I am about to take a 2-month leave from work because I am having trouble functioning. The GI problems can be mild to violent and sudden. Half of one Imodium pill usually helps. If I take more, I seem to go from liquid to constipation. The line is fine. I also have been getting skin sores. Very dry all over. Losing muscle mass. Blood levels for cells and liver are off, but my oncologist is happy with them. I do not like it, but the 35% improvement of outcomes keeps me going. I had my first mammogram post treatment last week and was clear, so that is good. In a few months I’ll have an enhanced PET scan so that will be a better look at what is going on. I’d say, you can try it. You can always go off or transition to one known to be better-tolerated. They usually say it takes 1-6 months to level off and settle symptoms down. But everyone’s situation is different. I still have 2 kids in high school so I am happy to try anything that improves my chances against recurrence.
I am your age 72 years old, have been prescribed Verzenio (abemaciclib)- diagnosed with STAGE 3 estrogen positive breast cancer in my lymph nodes. This is not my first rodeo - about 30 years ago had breast cancer/mastectomy - finished off with tamoxifen. Doctors think it is the same cancer - other then the cancer my health/weight is good and very physically active/retired at 70 so my life was good traveling and enjoying my new found freedom. Diagnosed last year - refused chemo since so debilitating, oncologists started me on hormone inhibitor Antrolose to shrink the cancer - worked very well with shrinkage and even some spots disappearing. Had surgery in FEB they removed 27 nodes 11 were cancerous. Then had 16 radiation treatments for mop up. Now the doctors have prescribed Verzenio for two years - was so reluctant after hearing/reading about the side effects, but after reading the benefits giving it a try - I am on the 2nd week - diarrhea, stomach upset, fatigue, headache, sleep issues, sometime a little dizzy, annoyed/little depressed. The drug does not like alcohol - probably should not have anyway. None of the side effects are not that bad - considering the alternative of the cancer returning again. I suspect the side effects will minimize after my body gets used to the drug - I find sleep and exercise really minimize side effects. I recommend taking - like my surgeon told me if side effects too bad then can always stop taking them. Also have had some hair loss from the Antrolose so taking extra hair vitamins to try and prevent any more hair loss while taking Verzenio. Wishing you good success erricaticing your cancer and wishes for a healthy long life. Stay strong!
I am 71 yrs old. In Jan. 2024 I was diagnosed with metastatic breast cancer throughout my sternum and in my liver and some clavicle lymph nodes. (had BC in 2012 :lumpectomy, radiation, 8 yrs of Arimidex)
I was told this time that the best treatment would be Palbociclib (CDK4/5) & Letrozole and have been on that now for 1.5 yr. The cancer in my liver and lymph nodes is gone and the mass in and around my sternum, which was also pushing against my heart, have shrunk measurably!!!
Yes there are side effects but having stage 4 cancer doesn't leave me with many options. My joints are aching, some days worse than others, my curly hair has gone thin and straight but I still think it is worth the discomforts to be here and enjoy a pretty good life with husband, kids and grandkids. I take some pain meds when needed. We have been able to do road trips and other travels despite having to "fight the dragon" again. I will stay on these as long as it works! After that we will have to see if there is anything else we can do.