I have been on Verzenio since July. I had full scans (CT Scan and Bone Scan at three month after start with great results. I also had a huge dip in my 27-29 numbers (from about 619 to about 168!). At my onc appointment and treatment on Friday, my onc initially said we would do scans again at the next three month mark. The, after discussion, we decided to wait until next 6 month mark.
I know Verzenio is new, but has anyone been on it long enough to be able to tell how long it took until disease progression? I am trying to decide exactly how long to wait until scans. If people are having terrific success and no progression, why do scans too early!
Looking forward to any real experience from this list. Thanks!
Anne in Cincinnati
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CincinnatiExperience
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Sorry I took a bit of a shortcut. We leave for our annual vacation in London this week, and I am really busy prepping for that,
Original diagnosis was in 2002 of Inflammatory Breast Cancer. Had the full three prong treatment (chemo--A/C/T, then surgery--bilateral, then radiation). Was on Femara for a very long time, then dropped that. Tried a few weeks of Ibrance when it was on extended clinical trial a couple of years ago. Didn't like it, so asked to stop (since I had no active signs of cancer at that time).
Mets found in May of this year, when I had symptoms and had to have the pleural cavity drained. Mets were liver, bones, lymph nodes in center of chest, maybe something else (too much to try to remember). Started Verzenio with Fulvestrant and Zometa.
I was on limited Verzenio because of severe side effects (it's me - can't take an aspirin without side effects! ), reducing down the dosage each time. I will say that I had miraculous healing and I firmly believe it was the meds and prayer (and my other homeopathic treatments) ! As for the length of time between scans, we went every 3 months until I was nearly NED. It is important to keep an eye on things. Every person's body is different..
Walmart. Was on verzenio from June 2018 to may 2019. Scanned devery 3 months. April 2019 they found another spot which had to be biopsied. It turned out to be a different type of breast cancer. Triple negative. I had to start chemo in may.
I was put on Verzenio after only do three cycles with Ibrance. I could not handle the 150 or 100 mgs. of Verzenio bc of the side effects. So I am now on lowest dose of Verzenio 50 mg. twice per day. I am having problems alternating between diarrhea and constipation which can be quite uncomfortable. I have gotten scans every three months. The fact that your doctor is willing to wait 6 months is a good sign I would think. The only way they will know if there is no progression is by doing 3 month CT scans. Nobody is going to be able to tell you how long until progression on any med. I do not think I have been on it long enough yet to my dr. to recommend waiting six months. During my last CT scan (I have mets to the lungs), they noted two holes in my spine so apparently it went there but my onco says they appear stable so besides the falsodex injection, I now also get another injection for my bones and she told me to take calcium supplements. We are going to wait until my next CT scan to see if they remain stable. I do not want to have a bone scan or any other tests until we see what the CT scan shows. If it remains stable, that will be good.
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