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new metastasis in pelvis, new protocol

kkrouse profile image
8 Replies

After 11 years dealing with mbc, and being no evidence of disease for 2 years, I now have in my pelvis. I’ll be getting 5 sessions of radiation. Then I start Kisqali and exemestane.

I didn’t tolerate Ibrance, I’m wondering how this will work on me. Is anyone who didn’t tolerate Ibrance now on Kisqali? Is it easier?

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kkrouse
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8 Replies
pollymacchili profile image
pollymacchili

Good morning! I was on Ibrance as a first line of treatment for MBS for only 9 days in 2018. ! Developed a rash and intense itching! After a course of steroids to clear the itching, I was switched to Kisquali and letrasole and tolerated those well for 15 months! Then the itches came back with a vengance . The next step in the standard of care would have been fluvestrant injections , but there was a clinical trial opening at Dartmouth Hitchcock (2.5 hr drive) to evaluate an oral SERD (amcenestrant )and I qualified, was enrolled and got 18 more months of stability, no progression. Unfortunately the trial ended in Sept 2022 without FDA approval so I began fluvestrant injections 1x monthly 3 months ago. Seems to be effective, still no progression, tolerating the injections well. I am a big proponent of clinical trials as you get VERY good surveillance and bi-monthly monitoring with scans, etc. Doing well, hope same becomes true for you.

Bettybuckets profile image
Bettybuckets in reply to pollymacchili

gosh good care but you were 2.5 hrs away so hard on you. Good luck and thanks for doing that trial which may someday help us all.

Tolife_18 profile image
Tolife_18

I congratulate you on 11 years with MBC incl. 2 with NED. This give us all hope!

In terms of tolerance of Ibrance and Kisquali. Yes, they’re both of the same class (CDK 4/6), but they’re not equal. So depending on what side effects you experienced with Ibrance you may or may not experience them again.

Good luck with the new treatment and many more years to come!

kkrouse profile image
kkrouse in reply to Tolife_18

thanks. I had every side effect listed for Ibrance. Ugh. We’ll see.

kkrouse profile image
kkrouse in reply to Tolife_18

I’m now off Kisqali. It took me down hard after 4 cycles. Now just on exemestane. So far only hair loss, and no progression after 3 months on that alone.

Dragonfly2 profile image
Dragonfly2

dear KKROUSE! First, congratulations on dealing with MBS for so long...makes me believe that for some of us it's more and more like a chronic condition. Miserable, yes, but manageable. I am on Anastrozole and Ibrance...the Ibrance was really starting to bother me with extreme fatigue , depression and low neutrophils. Convinced my ONC to let me try the 5/2 alternative schedule ( there have been two trials showing it avoids low neutrophils and is actually better for overall well being) where you take it for 5 days, stop for two, and continue without a break. Im doing well now after 4 months on this new regimen. My point is that sometimes it's the way you take the meds that can affect you more...I do hope you find a solution to your needs and continue to do well...for many many more years. Best wishes!

kkrouse profile image
kkrouse in reply to Dragonfly2

thanks for the new, to me, perspective

Fiercelypink profile image
Fiercelypink

Good afternoon! Looking for information to compare Ibrance and Kiqali myself, I came across this discussion. I took Ibrance for a year and really struggled with terrible brain fog to the extent that I could hardly work, joint pain was awful, had some hair loss, and the usual neutropenia and blood work irregularities. After radiation in July of 2022, I was off everything except Tamoxifen for a year, and then my cancer showed up again in my chest wall this spring on an MRI, PET scan, and biopsy confirmed. My oncologist is trying me on Kisqali this time; he says new research shows it has slightly better effectiveness and that some patients tolerate it better. I've completed my first cycle of Kisqali and have not had the brain fog that I had in the first month of Ibrance. I've had a few headaches when I don't hydrate enough, a bit of constipation, and there are a couple of itchy spots on my arms. So far, I'll take Kisqali over Ibrance for sure!! I look forward to any feedback from those who have been taking it longer though.

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