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 09:59AM - edited Jul 31, 2019 08:03AM by moderators

Posted on: Jul 30, 2019 09:59AM - edited Jul 31, 2019 08:03AM 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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Nov 8, 2019 04:59AM godisone wrote:

hey moderators. i am glad that there is something new brewing up on our website and cant wait for it to unfold. Sharing the best two articles related to CDK 4/6 Inhibitors that I came across

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6050811/

https://www.voiceofcancerpatients.com/article/cdk-4-6-inhibitors-in-breast-cancer

Hope it was helpful:-)

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Nov 10, 2019 12:17PM BlueGirlRedState wrote:

I am on cycle 2, day 5 of Ibrance (125mg) , also taking Arimidex (1 mg). This is 3rd time for BC. 2009 left, lumpectomy, radiation, tamoxifen 5 years. 2016 left, chemotherapy, bi-lateral (my choice), started generic aromatase, SEs noticed almost immediately(joints),stopped after 4 months, switched to tamoxifen after 2-3 month break from anything. 2019 Right side. Lymphedema in right arm first symptom, contralateral, nodes had been removed on left. PET scan showed no mestasis, Genetic profile showed none of the 20 plus known markers. Quite depressed about this.

SE - fatigue. DR says blood counts down, but expected with Ibrance. Not so low that she wants to prescribe additional treament or take me off of Ibrance. Blood tests every 3 weeks or so. Thinning hair - too much in the hairbrush. With Ibrance, no grapefruit or pomegranate.

Ibrance sent me a pillbox to help track the 21 days on, 7 days off. I am not using this. If it can be donated to someone who could use it, let me know where to send it. In the morning, I put the Ibrance and Armindex into a shot glass with the supplements and take at breakfast. In a food/exercise journal , I track the days. So far this is working for me. Also mark it down on a wall calandar.

Tips/advice

- Stay active, eat healthy, stay hydrated. I eliminated alcohol. Yes I miss wine with dinner and it is hard to get something that is not alcoholic or sweet when eating out. Even tea is expensive, and selection not always very good. Cut down on the sweets and do not use sugar substitutes. I've eaten lots of fruit/vegetables for a long time, and continue to do so. I try to get 8 glasses of water a day. If I count the coffee and green tea and herb tea, I make it. As it get cold, a little ginger or lime in warm/hot water helps with drinking water. I also like a non-carbonated/non-sweetened water called "Hint". I warm that and sometimes drink before breakfast. My dog makes me go for daily walks, and there are lots of near-by places for beautiful hikes. Once trails get too wet, it will be back to the sidewalks. Once I get over this cold, I will resume workouts at gym (weights, treadmill, maybe swimming), even if I have to scale them back. Also will try and get to both a Gigong class and a Tia Chi class.

- I take magnesium for leg cramping, Mg glycinate seems to work the best for me. I take lots of other supplements as well. I think turmeric is very helpful for joint stiffness. I take a turmeric supplement as well as adding it meals.

- Reading "Anti-Cancer Living" by Cohen and Jeffries. Their focus: Building social/emotional support; managing stress; improving sleep; exercise; diet; minimizing environmental exposure to toxins. I've started taking off my glasses (which darken) for at least 10 minutes while out walking.

- Ibrance is increadibly expensive. I do not know what my insurance would pay, because the DR is using some sort of grant program that makes my out-of-pocket zero. My out-of-pocket has never been zero for medical. I think there is information on their website.

-

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Nov 11, 2019 08:44AM moderators wrote:

Thanks, Everyone! Please all keep sharing!

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Nov 14, 2019 03:32AM tarheelmichelle wrote:

I’m on my 26th cycle of Ibrance/Faslodex. I had previously been on Femara. My oncologist wanted me to try Ibrance with Faslodex, to give me a break from aromatase inhibitors. I had taken Faslodex by itself a few years earlier and had progressed, so I wasn’t optimistic, but I’ve had no progression. This combination has been a game changer for me. AIs made my bones hurt worse than my bone mets. I used to be unable to walk up the stairs in my townhouse without aching. I am now able to work out daily: bike riding, weight training, power yoga and 3-mile walks. Less aches. That doesn’t mean fatigue isn’t an issue, but at least I’m able to exercise

The effects of Ibrance are cumulative each month, so my off week is usually the one where I feel the weakest. I don’t schedule a lot of activities that week if I can help it.

The foods I enjoy — spicy, citrus, crunchy — are the foods that can contribute to mouth sores. I use the “magic mouthwash” rinse every night. My MO at MSKCC said doctors are switching to a steroid rinse, but when I switched, it didn’t help my mouth, so I’m back to magic mouthwash, which I have filled at my cancer center pharmacy. My local oncologist writes the scrip for me. It’s benadryl, an antifungal, and something else. It’s a sticky mess and hard to remember to take with me when I travel, because you have to keep it cold. I sometimes put it in a S’well bottle, which keeps it cold for 24 hours. But I have to put it in my checked luggage. For carry-on, keep it in the prescription bottle, labeled, with an ice gel pack.

I bought a lot of surgical masks in the beginning, because I was worried about low WBC, but didn’t wear the masks long. I found out about hydrogen peroxide wipes, which kill norovirus germs. I carry them with me all the time. Amazon sells them. At restaurants, I wipe off the table surface, and wipe my hands after reading the menu and before my hands touch any glass or silverware. I also wipe my hands after using buffet utensils. I wipe down airplane tray tables, doorknobs, my car. Yep, I’m that lady.

Because Ibrance affects mucus membranes, and because I have radiation damage to my esophagus, swallowing is sometimes difficult, and I subconsciously avoid hydration. I have to force myself to drink water. I’ve found that icy cold water is best. A one-handed Contigo aluminum water bottle has been the winner for me. It has an extra cover to go over the opening, so it doesn’t spill in my purse. My mouth gets “hot,” particularly week 4, and popsicles help immensely.

My insurance company delivers my Ibrance to me through a mail-order service. It’s sometimes a drag having to start up each month. I sometimes give myself an extra day off before I start.

Ronda - Extensive mets to lungs & bones. My life is Stage IV precious. Celebrating 11 years with Stage IV 12/2022 Dx 2/14/2008, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/10/2008 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Radiation Therapy 4/16/2008 Dx 12/19/2011, Other, Stage IV, metastasized to bone/lungs, mets, ER+/PR+, HER2- Hormonal Therapy 1/30/2012 Aromasin (exemestane) Hormonal Therapy 12/18/2012 Faslodex (fulvestrant) Hormonal Therapy 7/16/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/23/2014 Reconstruction (Left) Local Metastases 11/21/2014 Radiation therapy: Bone Targeted Therapy 11/16/2015 Afinitor (everolimus) Targeted Therapy 5/19/2016 Hormonal Therapy 5/31/2016 Femara (letrozole) Radiation Therapy Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Nov 14, 2019 05:28AM moderators wrote:

TarheelMichelle, thank you so much for your help! Heart

The Mods

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Jan 22, 2020 11:29PM emac877 wrote:

I'm new to the stage IV diagnoses and was put on Verzenio as a first line treatment which I understand is unique. My MO (who I love) is very vigilant with my treatment and chose this as I had been hospitalized twice for neutropenic fevers during my initial breast cancer treatment with Taxotere/Cytoxan. The costs of these meds are incredible! My insurance denied the Verzenio because I had not yet been on Ibrance, even with my MO appealing it based on my history of being immunocompromised. The insurance still won that battle. Financially I qualified for a year of Verzenio with no out of pocket costs through the LillyCares program. I'm not sure what I will do when I reach that one year mark but I try not to think about that now. Nine days in and I am doing well. I have been told to make sure I get adequate fluids and my blood work is being checked weekly at this point. The oral chemo nurses call and check in with me weekly as well. My biggest "do" is to avoid grapefruit and grapefruit juice. I have been warned about the GI side effects and so far have not had issues with diarrhea. Zofran and tea help keep the nausea at bay.

I also take Faslodex and was taking Xgeva but that has also been denied so I am being switched to Zometa and will begin infusions for that the first week of February. My MO's office is wonderful. I have been closely monitored and with the financial questions I was immediately connected with people who help navigate those assistance programs. Like I said, I'm new to this but so far everything has gone smoothly. My insurance and the denials have been my biggest source of stress outside of coming to terms with the diagnosis and I am very grateful to have had help navigating those hurdles. I am also really grateful for the LillyCares program. I will need to work while I'm in treatment because I need my insurance. I'm not sure how any of this would be possible otherwise.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/21/2018 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 6/7/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Surgery 12/10/2019 Radiation Therapy 12/22/2019 External Local Metastases 12/22/2019 Radiation therapy: Bone Targeted Therapy 1/6/2020 Verzenio Hormonal Therapy 6/22/2021 Faslodex (fulvestrant)
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Feb 26, 2020 02:46PM HopeandGratitude wrote:

The diarrhea hit me on Day 6 and was really bad the first month or two. After a couple more months of dealing with unpredictable diarrhea and going through more immodium than I care to think about, I switched to lomotil for better control. I am taking 2 lomotil (2.5 mg) a day and a very good probiotic in the morning. The lomotil alone helped, but I was having some episodes of breakthrough diarrhea and once I went on the probiotic, that stopped. I am actually having some fairly normal stools now, which I have not had for months. Only on the rare occasion now do I have to pop one or two immodium. I do watch what I eat for the most part. No cruciferous veggies like broccoli, cauliflower etc. or beans that will cause gas. Limited salad intake (hard for me because I love salads). No spinach (from experience), which is often used to help relieve constipation!!! Avoid heavy, greasy foods. I watch the dairy intake and do take lactaid with it on occasion just as a precaution. I tend to eat smaller meals than I used to as well. I am off caffeine. I do indulge with the a glass of red wine a couple nights a week (I need something) and that doesn't seem to cause any GI issues.

For the first couple months I was afraid to go anywhere without a decent bathroom that I knew I would have immediate access to. The urgency was unsettling for sure. Now, I really don't have to worry and I feel like my QoL shot up. I am planning a walking/hiking trip to Scotland and the UK in June and up until a month ago I wasn't sure I was going to be able to do it, but now with the GI under control, I have confidence for the trip. I know I am going to have to be REALLY careful with the food there.

Good luck everyone!!!

Dx 3/1/2002, ILC, Left, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER+/PR+, HER2-, Chemotherapy 3/26/2002 CEF Chemotherapy 6/4/2002 AT Surgery 8/28/2002 Mastectomy: Left; Reconstruction (left): Free TRAM flap, Nipple reconstruction, Nipple tattoo Radiation Therapy 10/15/2002 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/4/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 1/12/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/1 nodes, ER+/PR+, HER2-, Surgery 2/14/2018 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 4/3/2018 CMF Chemotherapy 8/5/2018 Taxol (paclitaxel) Radiation Therapy 10/9/2018 External: Breast, Lymph nodes, Chest wall Dx 3/13/2019, IDC, 1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2-, Hormonal Therapy 3/13/2019 Femara (letrozole) Targeted Therapy 3/24/2019 Ibrance (palbociclib) Targeted Therapy 10/24/2019 Verzenio Dx 3/18/2020, IDC, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2-, Hormonal Therapy 3/20/2020 Aromasin (exemestane) Hormonal Therapy 4/6/2020 Faslodex (fulvestrant)
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Feb 26, 2020 03:02PM HopeandGratitude wrote:

I started on Ibrance plus letrozole at the highest dose. After the first cycle, did ok, but after second cycle, ANC started to take a hit. I enjoyed the "week off", but then that week off started to turn in to 10 days or two weeks to allow the ANC to recover. Happy to stay on the letrozole but I felt that I was off therapy more than I was on it after awhile. Also, my cancer had metastasized to my liver and did so fairly quickly after therapy for Stage III. From what I understood from the outcome of the verzenio studies, I was in a subpopulation where Verzenio likely worked better. I was concerned on the GI effects, but figured at least that was something we could manage. I was on Ibrance for about 6 months - even tried a different dosing schedule to see if it would help ANC and it did not. So, switched to Verzenio 150 mg (2x/day) plus letrozole. No issues with the switch from MO or from insurance. Per my other post, there were some bad GI issues that I now seem to have under control with lomotil and a good probiotic. No issues with ANC. Watching creatinine now as it has elevated slightly...fingers crossed it settles in so don't have to worry about kidneys.

Have some fatigue, but I sleep about 9-10 hours a night and nap when I need to. Fatigue getting better as GI issues improved.

Hope this helps!! Good luck everyone!!

Dx 3/1/2002, ILC, Left, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER+/PR+, HER2-, Chemotherapy 3/26/2002 CEF Chemotherapy 6/4/2002 AT Surgery 8/28/2002 Mastectomy: Left; Reconstruction (left): Free TRAM flap, Nipple reconstruction, Nipple tattoo Radiation Therapy 10/15/2002 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/4/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 1/12/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/1 nodes, ER+/PR+, HER2-, Surgery 2/14/2018 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 4/3/2018 CMF Chemotherapy 8/5/2018 Taxol (paclitaxel) Radiation Therapy 10/9/2018 External: Breast, Lymph nodes, Chest wall Dx 3/13/2019, IDC, 1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2-, Hormonal Therapy 3/13/2019 Femara (letrozole) Targeted Therapy 3/24/2019 Ibrance (palbociclib) Targeted Therapy 10/24/2019 Verzenio Dx 3/18/2020, IDC, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2-, Hormonal Therapy 3/20/2020 Aromasin (exemestane) Hormonal Therapy 4/6/2020 Faslodex (fulvestrant)
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Mar 2, 2020 03:05PM - edited Mar 2, 2020 03:07PM by dibel

I have only been on Verzenio for 5 days and feel like a truck hit me. The GI issues kicked in this morning and lasted about 4 hours. After that, I was so exhausted, I pretty much slept for the rest of the afternoon. I am shocked by my fatigue and wonder if that's the norm for this drug? I seem to feel best in the evenings. I guess it's the fatigue that has me worried, more so than the Gi issue of diarrhea because I can work with that. I'm also doing Faslodex and Xgeva. If this is normal, then it is what it is. Also doing a high quality Probiotic which I hope will make a difference. My dosage of Verzenio is 150mg 2x daily.

Thoughts, ladies?

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Mar 2, 2020 03:15PM emac877 wrote:

I'm also on 150 mg of Verzenio daily with Faslodex and Zometa infusions. The fatigue with Verzenio is significant. I usually do well in the morning but by 2 or 3 pm am fading fast. It was suggested that exercise may help that but I have found some days it seems to make the fatigue worse. I plan my day so that most of my tasks and appointments are in the mornings so that if I need to slow down in the afternoon it's not a total disruption of my day.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 3/21/2018 Lumpectomy; Lumpectomy (Right); Lymph node removal Chemotherapy 6/7/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Surgery 12/10/2019 Radiation Therapy 12/22/2019 External Local Metastases 12/22/2019 Radiation therapy: Bone Targeted Therapy 1/6/2020 Verzenio Hormonal Therapy 6/22/2021 Faslodex (fulvestrant)

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