Topic: Need your tips for taking a CDK 4/6 inhibitor

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jul 30, 2019 11:59AM - edited Jul 31, 2019 10:03AM by moderators

Posted on: Jul 30, 2019 11:59AM - edited Jul 31, 2019 10:03AM by moderators

moderators wrote:

Tips for Taking a CDK 4/6 inhibitor such as Abemaciclib (Verzenio), Palbociclib (Ibrance), Ribociclib (Kisqali)—Before and During Treatment:

Please share your advice for preparing to start treatment, dealing with side effects, testing during treatment, etc.

Thank you!!

p.s. this is to help us in a new content piece we are writing.

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Aug 7, 2019 02:49PM moderators wrote:

Hi Pirving, and welcome to Breastcancer.org,

We're so sorry to hear you're experiencing this side effect of treatment. We're sure there are others here who have similar experiences -- you may however, want to post on the Ibrance thread, where others on this regimen can weigh in.

We hope this helps and we hope to hear more from you soon!

--The Mods

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Aug 10, 2019 11:00AM - edited Aug 10, 2019 11:08AM by divinemrsm

I've been taking Ibrance since about the end of March, so I'm not expert. It's sort of learn as I go. Something I'm looking at now is dealing with fatigue and weakness. It was suggested by another Ibrance user that I may be anemic, since the Ibrance can affect not just white blood cells but red blood cells, too.

When I checked on the symptoms of anemia, I saw I had a number of them: fatigue, weakness, shortness of breath, rapid heartbeat. I had attributed the fatigue and weakness to Ibrance but was concerned as to why I was experienced shortness of breath and rapid heartbeat. Now I have a potential answer.

What I started this week is adding more foods to help the red blood cells and boost iron,such as peanut butter, dried prunes and other dried fruit, orange juice, fortified cereal and a number of other food I learned about when googling. I'm going to see if this diet adjustment helps alleviate any of the symptoms.

Lightheadedness and dizzyness can also be also signs of anemia, and I have them on occasion (they're also side effects of Ibrance). Headaches, too, but I've always had headaches so I can't say they're anything new to me.


found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Aug 13, 2019 03:48PM HopesFiercely wrote:

I am new to site. On verzenio, 150 mg 2x a day, since Dec. 2018 ( and anastrozole, 1 mg 1x a day since Nov. 2018). The verzenio starter kit came with a large box of lopermide and was much needed as the diarrhea was terrible. I learned to run at the slightest cramp, keep drinking to replace lost fluids, and carry a change of clothes. Thankfully my body adjusted and I only need 1 lopermide each morning. I have an alarm set on a cell phone to remind me to take my doses on time and keep a written record of when I take my meds to insure I have taken them correctly.

My main issue was with the fatigue that slowly became so bad over the first few months that I became unable to do more than a few tasks or errands in the morning then fell into exhausted sleep in the afternoon. It took careful planning to get to my appointments. My Doctor lowered the dose to 100mg 2x a day and the fatigue slowly left. I didn't really realize how bad it was until I started to feel better. My vitamin D level was found to be low also. Prescription vitamin D for 8 weeks followed by normal daily dose improved my energy level even more. My hair is beginning to thin also. But it's only hair. I'd rather be bald and live longer.



Best advice I got was to stay positive and laugh often at the humorous things that happen in my journey. Dx 2/2018, IDC, Right, Stage IIIA, 0/3 nodes, ER+/PR+, HER2- Dx 10/2018, Stage IV, metastasized to brain Chemotherapy AC + T (Taxol) Targeted Therapy Verzenio Hormonal Therapy Arimidex (anastrozole) Radiation Therapy External: Brain Surgery Mastectomy: Right Radiation Therapy Chest wall Surgery
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Aug 16, 2019 06:52PM - edited Aug 16, 2019 07:00PM by tarry

This Post was deleted by tarry.
Dx 5/30/2011, IDC, Right, 4cm, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Aug 16, 2019 07:00PM tarry wrote:

i'm on verzenio (100)m, and anastrozole with xgena. I've started taking 10 mg Ritalin for days when I want a bit more drive. I'd go higher on the Ritalin, but it interfers with my sleep. I've always had trouble with organization, and its worse now. I do an hour of pilates a week and try to get in more, but its hard to organize. I have a publisher breathing down my back and that's making my time short.

I was diagnosed 12 month ago, and have had no progression. My 4 mets are in my hips, one hip one and a shoulder one were zapped because they were causing a lot f pain.

Dx 5/30/2011, IDC, Right, 4cm, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 7, 2019 12:20PM moderators wrote:

Hi All,

Reviving this topic, as we would greatly appreciate some more information, if you don't mind:

What was your process of choosing which one to take?

In the first weeks of treatment—how were you monitored/ did any issues come up and how your team dealt with them (dose adjustments, treatment breaks)?

Were there any challenges taking the 3-weeks on/ 1-week off meds (Kisqali, Ibrance)—tips for staying on track?

Were there financial concerns—affording the medicine and out-of-pocket costs?

If you switched between CDK 4/6 inhibitors, what was that process like?

Were there any other specific "do's and don'ts" advice from your treatment team?

Thanks so much for your help!

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Nov 7, 2019 12:30PM BLMike wrote:

My wife is on Cycle #5 of Ibrance (teamed with Letrozole).

What was your process of choosing which one to take? We were told that Ibrance and Letrozole was the "gold standard" for her type of MBC. It seemed like a no-brainer. Her first scan showed some shrinkage so I guess it was.

In the first weeks of treatment—how were you monitored/ did any issues come up and how your team dealt with them (dose adjustments, treatment breaks)? She had blood work done after a week and then again after the three weeks of her first dose. Because of low neutrophils, her dose was modified from 125mg to 100mg. So far, so good on that.

Were there any challenges taking the 3-weeks on/ 1-week off meds (Kisqali, Ibrance)—tips for staying on track? Initially, when they were adjusting the dose, there were some disconnects between her MO and the mail pharmacy providing the Ibrance. This was frustrating as it caused a few day delay in getting back on treatment. In retrospect, we probably should have been more assertive in ensuring there was coordination and communication between the MO and the pharmacy.

Were there financial concerns—affording the medicine and out-of-pocket costs? No. My wife has really good insurance.

If you switched between CDK 4/6 inhibitors, what was that process like? N/A

Were there any other specific "do's and don'ts" advice from your treatment team? Although we've tried to keep to a "normal" schedule, we're careful not to travel and spend a lot of time in crowds and in close quarters with others when her immune system is the lowest (during the last week of her 3 week cycle). She rests when she's fatigued, and uses Biotene mouthwash for occasional mouth sores.

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Dx 10/2020, IDC, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2021, Stage IV, metastasized to brain Targeted Therapy Piqray (alpelisib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lumpectomy; Lymph node removal: Underarm/Axillary Radiation Therapy Breast Hormonal Therapy Femara (letrozole) Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Targeted Therapy Lynparza Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Nov 7, 2019 07:30PM karenfizedbo15 wrote:

Hi, I’m on cycle 16 of Ibrance/ Letrozole. No other options given at this stage. No financial issues as Uk NHS.

Started on 125mg, dropped immediately after 2 cycles to 100mg and then again to 75mg. Treatment cycle never managed to keep on track as bloods too low, except for once ( 3 weeks on 1 week off). So I am on a 5 week cycle with bloods and nurse - 3 on 2 off in order for my cell count to recover. I achieved No evidence of disease after 6 months ( just had a CT scan this week so we’ll see). 6 month scans with an oncologist meeting on report results. No additional scanning as team confident I would have symptoms ( lump in neck / chest and breathless as cells in pluera of lungs, causing a pleural effusion)

Side effects minimal compared with IV chemo... some hair thinning, sore joints, fatigue ( a decent haircut, exercise and a hot sauna helps).

Advice, use a decent mouthwash daily; rest more but do the things you enjoy; be mindful and grateful; avoid snotty kids ( I was a teacher for 32 years) and crowded placesand don't be afraid of dose reduction.

Surgery 9/7/2007 Lymph node removal; Mastectomy; Mastectomy (Right); Reconstruction (Right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/4/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Nov 7, 2019 08:10PM - edited Nov 7, 2019 09:09PM by divinemrsm

After 4 months on Ibrance/Aromasin, progression moved me on to Verzenio/Aromasin. Diarrhea is an issue and I plan to try Vln's suggestion of using FiberCon. I take PeptoBismol for it which also helps with nausea but I worry about overuse.

Nausea: Cold foods are easier to eat than warm/hot food. Applesauce, popsicles, cold sandwiches, cottage cheese, jello are some foods that I keep around.

Moderator questions:

What was your process of choosing which one to take?

  • After eight years stable on Arimidex, progression led me to taking Ibrance which is what my onc recommended.

In the first weeks of treatment—how were you monitored/ did any issues come up and how your team dealt with them (dose adjustments, treatment breaks)?

  • Got bloodwork every two weeks and had to take a break the first month due to low wbc count. Onc also dropped dose from 125mg to 100mg.

Were there any challenges taking the 3-weeks on/ 1-week off meds (Kisqali, Ibrance)—tips for staying on track?

  • No challenges. The best thing I did was set a recurring alarm on my phone to take meds at same time every day and so I wouldn't forget.

Were there financial concerns—affording the medicine and out-of-pocket costs?

  • This month I had to switch from private insurance to Medicare and I dread dealing with the high cost of co-pay for the Verzenio I'm now on since Ibrance failed. Prior to that, I was able to use the copay cards the Ibrance and Verzenio companies offer for private health insurance. It boggles my mind that Medicare recipients are stuck with huge copays at a time when our finances are limited.

If you switched between CDK 4/6 inhibitors, what was that process like?

  • Ibrance was no picnic. After it failed, I just stoped taking it a week or two and began Verzenio which has been even rougher. I have no stamina. Need help getting groceries, cleaning house, ect. I used to walk for exercise but feel too weak to do that now. The nausea is rough and its hard to enjoy one of life's little pleasures, eating. I feel more down than ever before.



found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Nov 7, 2019 11:58PM sadiesservant wrote:

Hi All.

I’ve been on two of the CDK inhibitors so far.

I started Ibrance not long after my stage IV diagnosis, taking it with Arimidex. Interestingly, my neutrophils were never an issue and I found it quite an easy treatment beyond some fatigue. However, my red blood cells and hemoglobin were another matter. They both declined steadily until my MO said we needed to stop. (Transfusions are not common here.) It took months and months for the blood to get back to normal levels. Soon after stopping Ibrance, I had significant progression in my bones and it was time to move on from the AI.

After a quick stint on chemo I moved to Faslodex in January 2017. While some have been fortunate to get years out of Faslodex there were some indications that it might now be failing. So, I recently started Verzenio almost three years after stage IV diagnosis now that it has received approval for use in Canada ( but not yet funded).

To be honest, I have found Verzenio tough. Granted, I started at 200 mg twice daily which is a high dose. The diarrhea was manageable but I had severe nausea and quite a bit of fatigue. After 2 weeks my MO told me to pause. Today I started it again at 150 mg twice per day but wondering if I will hear from my MO as my blood numbers are going down even after a two week break. (WBC, RBC, Hb and neutrophils.) Oh, oh. Hopefully at a lower dose things will be a bit easier.

My advice is to persevere and find the dose that works. Don’t feel you need to be at the highest dose to be effective. Drink lots of water, eat small meals and stick close to home for the first few weeks

In Canada, access to these drugs is still a problem. I was fortunate with Ibrance - my extended health plan covered the cost. With Verzenio it’s been a bit more convoluted. We applied for access under the compassionate program but were initially turned down. We asked again and were approved with Lilly covering the cost for now. Then I applied under my extended health - denied. Trying again but thankfully Lilly is still supplying the drug.

So things are a bit up in the air but I keep forging ahead. As Divine said, these drugs can be challenging but if it gives us time, it’s worth it. And I worry that if I stop I will see rapid progression again!

Hope this is helpful.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/19/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External Local Metastases 8/2/2018 Radiation therapy: Bone Radiation Therapy 11/5/2018 External Local Metastases 11/5/2018 Radiation therapy: Bone Targeted Therapy 10/10/2019 Verzenio Radiation Therapy 11/3/2020 External Local Metastases 11/3/2020 Radiation therapy: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Other Chemotherapy 1/7/2022 Other

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