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Nov 7, 2019 11:58PM
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.
4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+
5/11/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary
12/17/2001 Whole breast: Breast
12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
1/2/2007 Femara (letrozole)
10/22/2007 Arimidex (anastrozole)
1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2-
1/27/2017 Taxol (paclitaxel)
3/29/2017 Arimidex (anastrozole)
4/20/2017 Ibrance (palbociclib)
10/12/2017, IDC, Right, Stage IV, metastasized to other
10/21/2017 Xeloda (capecitabine)
11/15/2017 Radiation therapy: Bone
1/19/2018 Faslodex (fulvestrant)
8/2/2018 Radiation therapy: Bone
11/5/2018 Radiation therapy: Bone
11/3/2020 Radiation therapy: Bone
1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2-
2/4/2021 Xeloda (capecitabine)