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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Mar 27, 2020 06:54AM filabrasileiro wrote:

I have been on Letrozole and Ibrance combo for 18 months. I take it every evening. 2 days ago I was researching Disulfiram as I had been interested in adding it and I was suprised to read a report that this inexpensive drug enhances the effectiveness of both Ibrance and Verzenio!! I plan to add this to my regime ASAP. I was diagnosed stage IV but my original tumor died, auxiliary lymph nodes now appear normal and 2 largest of my bone mets are dead and now bone is filling in again. I had a tiny active lesion in 1 rib. I am interested to see if Disulfiram will help enhance Ibrance to kill it (or work on its own merits)

ER+PR+HER2- de novo stage 4
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Mar 27, 2020 09:39AM vlnrph wrote:

As a retired pharmacist, I am always interested in the repurposing of older medications. Antabuse being the brand name for disulfiram tells you what it’s original use was: providing an antidote to alcohol abuse.

It creates an extremely unpleasant reaction in anyone taking it whenthey consume any amount of an ‘adult beverage’. There are warnings about ingesting cough syrup and even using hand sanitizers! So, you need to be very careful and read labels on every product. There are also a number of drug interactions of which to be aware.

Doing a quick google search, the references I located regarding the anti-tumor activity of this chemical date from 2013. If the compound was as beneficial as you seem to think, it would probably have been added to our regimens by now. Can you provide a link to the information you found?

Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Mar 27, 2020 08:18PM kanga_roo wrote:

I have been on the Kisqali/letrozole combo for over 2 years.


Before:

Read possible interaction with drugs or supplements you may be taking.

If it is possible, take the letrozole for 1 week before you start the kisqali. That way, you will not confuse any side FX of the two. Make notes of any symptoms, eg hot flashes, aches, pains etc. if tolerable you are good to go with the kisqali.

During:

Take both at the same time - experiment with what is best for you. I take mine after dinner.

Review any side FX. This may include nausea, skin irritations etc. l had to reduce my dose from 600mg to 400mg which seems to still be just as effective.

Your week off is when your white blood count is at its lowest. Take care of yourself and keep away from sick people, particularly now with the Codvid19.

Take your notes with you, and write down any questions you may have for your next visit with your oncologist. For example, one of my questions was related to my concern about healthy bones. My oncologist suggested I take extra calcium and Vit D.

Join one of the threads here; I have found the kisqali one very helpful, and it is comforting to share and compare progress with others.

Just my opinion:

Kisqali combo allows you to lead a fairly normal life, so get on with it if you can. Eat sensibly, sleep well, get a bit of exercise and sunshine, and do as many of the things you usually do.

Jackie.

Dx 1/24/2018, IDC, Left, 5cm, Stage IV, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 2/11/2018 Femara (letrozole) Targeted Therapy 2/15/2018 Kisqali
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May 29, 2020 10:18AM HopeandGratitude wrote:

Have been on verzenio now for almost 9 months after ibrance for about 4 months. Had to go off Ibrance due to ANC issues. Was ok on verzenio 150 mg 2x/day until I started xgeva and faslodex, then my tolerance for verzenio seemed to plummet - persistent Grade 2 (borderline Grade 3) diarrhea even with maximal support for about 2 months. Might just be temporal association or there might be some sort of interaction. Dealing with that through a dose interruption (I feel human again) and then a lowered dose (and pray I can tolerate). So, just bear in mind that getting used to these drugs is not just always in first month or two. Do not be intimidated to say something if your side effects are getting worse. Dose reductions are possible and they are also still active against the disease.

ONE very important point for all newbies - moderators maybe make a note here!! I was conversing with folks on the verzenio thread. When I first started Verzenio, my husband installed one of those toilet seat bidets. He has wanted to try one anyway. Fairly simple to install and not that expensive. It has really saved me much suffering and discomfort for those many consecutive days and hours...for MONTHS....when I was shackled to the toilet bowl. I haven't heard much on this, but I feel we really suffer enough and anything that can help us feel more comfortable and more healthy is worth considering. Patients should consider this if they are on verzenio or if diarrhea is an issue on the other inhibitors.

Dx 3/1/2002, ILC, Left, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER+/PR+, HER2-, Chemotherapy 3/27/2002 CEF Chemotherapy 6/5/2002 AT Surgery 8/29/2002 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 1/5/2003 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 2/15/2018 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 4/3/2018 CMF Chemotherapy 8/6/2018 Taxol (paclitaxel) Radiation Therapy 10/10/2018 External: Breast, Lymph nodes, Chest wall Dx 3/13/2019, IDC, 1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2-, Hormonal Therapy 3/14/2019 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 4/7/2020 Faslodex (fulvestrant)
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May 30, 2020 01:43PM - edited May 30, 2020 02:08PM by Japgh

emac877, so sorry to hear your report - will pray for you so you can continue to work! The drug prices are obscene and yes help is available from these companies which are given thru grants from nonprofits who have tax benefit# that may be set up to flow to the drug co &/or their sponsors. Always ask if the drug is also available as a generic. Also ask if their are other drugs that insurance company is requiring 1st as you have found out and research your case know your symptoms, your allergies, other health issues, and propensities for treatment and whether the adverse effects from the drug are reversible if you get them. It is my position that one should have certain rights in these kinds of decisions. As there may be a good reason why you should not be on that drug AND more importantly one may not want to run the risk of permanent adverse effects from the drug the insurance co wants you to use first. The price on Verzenio was $2500 per month and Afinitor is $14,988.00 per month, and if one is on Medicare one should ask what Medicare or the Medicare advantage is paying. We do not ask these Qs bcz we have insurance - but we should ask up front. My path is showing me much about the issues in this area as well as treatment protocols and I keep asking why we are not advancing toward cures. I pray that you get divine direction on all decisions that you have to make. My best to you.

PS. In 2011 I had a radiologist tell me that there had been findings that radiation after breast cancer surgery was causing cancer in the perimeter of the irradiated area 20 years out. A resident md told me that was not true and when I asked the radiation oncologist he said Yes that is true - so I opted out of the radiation. Had a friend who 20 years post radiation trtmt was diagnosed with breast cancer in her lungs. She decided to forego further treatment. Two years ago my cardiologist asked me if I had radiation post breast surgery (lumpectomy after neoadjuvant treatment with Arimidex of 5.2cm lump that resolved the lump by 97% within 9 months!!!). Cardiologist said good now they are finding that the radiation has affected some patients' hearts. So just BE DILIGENT and ask every Q that you and your family and friends have or can think

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May 30, 2020 08:09PM moderators wrote:

HopeandGratitude, note taken! Fabulous idea with the bidet.

Japgh, thank you for sharing your experience. Not every treatment is for everyone, and indeed you need to advocate for your self, ask lots of questions, talk with others and get other professional opinions.



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Jun 18, 2020 11:10PM Kathylou2u wrote:

Thanks for your information. I start Kisqali in July. I’ve been on Letrozole for a few months. Doing ok with it. Just a bit worried about adding Kisqali. I work full time and hope it won’t interfere with my job. Hopefully I won’t lose my hair. I’m sure thin I g is a given though. Thanks agsin

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Jul 1, 2020 06:10PM lafsunshine wrote:

Hi-I am new here. I recently found out that my breast cancer has now metastasized to the liver. I have spoken with numerous oncologists, 2 want me to take Ibrance with letrozole and 2 want Ibrance with faslodex. Not sure what path to take, if one combo is better than another.





7/2021- Keytruda + Abraxane Dx 1/2018, IDC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+, HER2- Dx 7/2020, IDC, Stage IV, metastasized to bone/liver/other, ER+/PR-, HER2- Radiation Therapy Whole breast: Breast Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Lumpectomy; Lumpectomy (Left); Lymph node removal Hormonal Therapy Faslodex (fulvestrant)
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Jul 2, 2020 12:10AM sadiesservant wrote:

Hi lafsunshine.
Sorry you find yourself here. in my case, I had rapid progression on Arimidex (letrozole) but I had been on it for three years as part of my adjuvant treatment. That may have had something to do with the durability of my response. Many do well for a long time on that combo. Faslodex has been great for me though... 2 1/2 years and counting!

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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Jul 2, 2020 01:53AM moderators wrote:

Welcome, lafsunshine-

We're so sorry you find yourself here, we know this is a difficult time. But we hope this community can be a source of support you, as you continue on this journey. You are definitely not alone!

The Mods

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