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

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

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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Posts 1 - 15 (15 total)

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Jul 30, 2019 02:49PM 3-16-2011 wrote:

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

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane) Targeted Therapy 10/15/2015 Afinitor (everolimus)
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Jul 30, 2019 11:26PM jensgotthis wrote:

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

Dx 12/3/2015, IDC: Tubular, Left, 2cm, Stage IV, metastasized to bone, Grade 1, 0/12 nodes, ER+/PR+, HER2- Chemotherapy 1/4/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2016 External: Bone Hormonal Therapy 5/23/2016 Surgery 5/25/2016 Lymph node removal: Left; Mastectomy: Left Targeted Therapy 9/14/2016 Ibrance (palbociclib) Hormonal Therapy 9/14/2016 Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy
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Jul 31, 2019 01:24PM vlnrph wrote:

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!

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jul 31, 2019 03:13PM Moderators wrote:

We really appreciate you sharing your experiences with us! Please keep them coming. This is SO helpful!

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Jul 31, 2019 07:20PM movingsoccermom wrote:

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. :(

Dx 3/3/2015, IDC, Right, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 4/1/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 5/27/2015 Whole-breast: Breast, Lymph nodes Dx 5/7/2019, IDC, Right, 2cm, Stage IV, metastasized to lungs, Grade 2, ER+/PR+, HER2- (IHC) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Aug 5, 2019 08:49PM Laurie11374 wrote:

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.

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Aug 5, 2019 09:25PM Kanga_Roo wrote:

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

Dx 1/24/2018, IDC, Left, 5cm, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 2/11/2018 Femara (letrozole) Targeted Therapy 2/15/2018 Kisqali
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Aug 6, 2019 01:48AM Simone80 wrote:

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.

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Aug 6, 2019 08:53AM Moderators wrote:

Thanks again, and the more feedback, the better!


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Aug 7, 2019 01:04PM Pirving wrote:

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

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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~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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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 Surgery Chemotherapy AC + T (Taxol) Targeted Therapy Verzenio Hormonal Therapy Arimidex (anastrozole) Radiation Therapy External: Brain Surgery Mastectomy: Right Radiation Therapy Chest wall
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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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