Need your tips for taking a CDK 4/6 inhibitor
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.
Comments
-
I am taking Verzinio which is notorious for GI SE. It does get better after the first 30 days. Also, I can almost eliminate all problems if I eat several small meals and avoid dairy. I do struggle with fatigue and would love to hear if others have found a good answer for this SE.
Thanks to all
Mary
0 -
Pfizer suggests that it’s very important to take Ibrance with a small amount of fat, so many here take it after breakfast or dinner. Some have found it disrupts sleep less if taken in the morning. Lastly, it’s imperative to drink a lot of water while taking this drug. For the fatigue, exercise and water intake seem to make a positive difference
0 -
As described in the managing diarrhea post, I use a special weapon against this well known side effect of Verzenio. For me, the suggested OTC Imodium=generic name loperamide worked too well: everything stopped up and then there were terrible abdominal cramps, etc as it wore off. I did go for a dose reduction also.
By taking two FiberCon tablets or the much less expensive calcium polycarbophil daily, I get absorption of excess fluid which remains in the gastrointestinal tract so the stool bulks up without creating constipation. Curiously, this productis stocked with laxative agents. Look near the Metamucil canisters.
As far as fatigue, I pace myself by not over scheduling, allowing time to lie down as needed and doing a water exercise 2-3 class times each week. Like Jen above, I feel better when hydrated. We have had to hire out jobs around the house which I would have attempted previously and have the funds for that by taking advantage of the Social Security disability allowance for those with metastatic disease. I am collecting the amount I would be getting if I were at full retirement age!
0 -
We really appreciate you sharing your experiences with us! Please keep them coming. This is SO helpful!
0 -
Since I started Faslodex and Ibrance at the same time, not sure which drug to blame for light headedness, but that has been my biggest challenge. Another member carries potato chips for the salt when needed--I chose salted peanuts and always have a water bottle in tow. I take Ibrance with dinner and have had no other issues besides the fatigue, and neither exercise nor water have helped.
0 -
I have been taking Kisqali/Femara combination since May 2018. Only side effect I fight is joint pain and mild fatigue. I feel like my normal self 99% of the time. This disease has not slowed me down! My scans have been clear since Nov 2018. Lumpectomy in Jan 2019, there was only crumbs left of the original tumor of 5cm. Radiation April 2019, made it through 24 out of 30 treatments due to severe burn.
0 -
Tips:Kisqali/Letrozol combo
Everyone is put on highest dose initially. If sideFX are really bad you can always go on a lower dose.
Always take after food.
If you have sideFX, take medication in the evening and sleep the worst of it off over night
If you suffer nausea, take nausea prevention half hour before you take your medication
Drink plenty of water to ensure you stay hydrated.
Exercise 15 minutes per day, even if it is a gentle walk to the end of your street and back, or a couple of laps of the mall.
Femara reduces hormone production and results in an increase of ageing sideFX. Treat yourself kindly - moisturise your skin, avoid harsh sunlight, take some Panadol for the aches and pain etc, etc
Try not to obsess over your treatment. Let it do it's job whilst you get on with your life.
Get the OK from your Oncologist before doing the following:
Femara may increase your sugar levels and you may put on weight. Look to improve your diet where possible. I have had great results on Keto.
Supplement your Vit D to aid in utilising calcium to strengthen bones. Get 15 minutes of sunshine per day where possible.
Magnesium citrate helps with cramps and aches, and can also alleviate constipation.
Sleeping pills can help if you are having problems settling down at night.
Don't ignore depression or anxiety - plenty of medication and ideas to alleviate these symptoms.
Jackie
0 -
Mouth sores are a common side effect. To help avoid getting sores: use a soft bristle tooth brush. Biotene toothpaste and mouthwash work well and are less harsh than regular toothpaste. Swish with baking soda throughout the day.
Your MO can also prescribe Miracle Mouthwash which will numb your mouth and help with the pain.
0 -
Thanks again, and the more feedback, the better!
0 -
Hi new to the site. I need your help l am taken ibrance and flasadex. Ibrance does is 75mg. When I have my week off of ibrance I get severe muscle spasms and pain in my lower back
0 -
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
0 -
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.
0 -
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.
0 -
i'm on verzenio, anastrozole with xgena. I've started taking 10 mg Ritalin for days when I was 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.
0 -
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.
0 -
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!
0 -
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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:-)
0 -
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.
-
0 -
Thanks, Everyone! Please all keep sharing!
0 -
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.
0 -
TarheelMichelle, thank you so much for your help!
The Mods
0 -
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.
0 -
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!!!
0 -
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!!
0 -
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?
0 -
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.
0
