I was diagnosed June 2021, bones only, ibrance and letrezole for 2 years, then progression to liver, 6 months on paclitaxel then further progression to bones, liver and periteneum.
PIC3CA mutation so onc wants to try Alpelisib and fulversant. Feeling extremely down about it all, cancer seems to spread so fast. Suppose I’m wondering if anyone has any positive stories with this regime? Progression free survival times?
Also anyone have any side effects from stopping IV chemo, my back is really hurting and wondering if it’s that or further progression. I’ve been off IV for 3 weeks, due to start Alpelisib next week.
Thanks x
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RachH20
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Dear Rach, I’m not on your drug protocol so I don’t know anything about them. Someone will soon answer you I’m sure.
I just want you to know that I’m praying for you. I was diagnosed with Stage IV de novo breast cancer in 2016. Still here. Hang in there. Drugs get better for us every year and there are so many options out there and down the road a bit. It’s a tough diagnosis but there are people living a longer time!
hi 🫶🏻 this is Stacy . I have bones only MBC ER/PR . I was on letrozole from 2015 until 2017 when I spread to the bones only. Then in 2017, I went on Versenio twice a day faslodex (brand only ) and Zometa infusions. My CANCER ANTIGEN TESTS NUMBERS BEGAN TO LOWER . Yay ! Then by 2019 my pet scan showed clear only scar tissue. Cancer antigen tests were way below normal . I was switched from the Zometa infusions to Xgeva injection. Since 2019 my PET scans every six months have been clear no sign of the disease. It’s all scary and I wish you loved and you can ask me anything you want.. after I had my surgery in 2015 I had my breast put back on. My hair never grew back and I suffer with waking eyes down my face 24 hours a day.. my ducks closed up and they can’t seem to probe them open .
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