u/Loki1451

Hi all, I start Trodelvy three weeks ago as my fifth line of treatment. I wasn’t super confident because Taxol and Carboplatin (fourth line) failed after four infusions.

So far my AST, ALT and Bilirubin have gone down. Bilirubin has always been in the normal range, but had started to creep up. Tumor markers went from literally off the chart — >3,000 — to 2,300. Still high, but I’ll take a 700 drop!

I did end up in the hospital for four days after the second infusion. Neutropenia, anemia and neutropenic fever. I got a blood transfusion and a ton of antibiotics. All counts are still low, but we’re good enough to get treatment yesterday. My oncologist reduced the dose by 25%.

The scariest part is that if not for a fever, I would not have gone to the ER, but my blood counts would have been just as bad. Going forward, I’m going to be extra careful about washing my hands (which I’m already careful about) and wearing a mask anywhere there’s a crowd.

Really hoping the Trodelvy keeps working. There’s a clinical trial I might qualify for in July, but the liver mets need to shrink a bit. Last CT, they’d started growing into each other and radiologist couldn’t tell where each started or ended. 😬

This week my oncologist switched me from Filgrastim injections to the patch delivery device even though I had no problem continuing the injections. I’ve almost knocked the patch off three times, the light kept waking me up last night (yeah, that can be fixed with a longer sleeve or gauze tape) and just now it started clicking — which I was informed about — but it keeps clicking and clicking and clicking. I had no side effects from the injections, but I suspect I’ll experience the ickiness I felt from next-day Neulasta shots 12 years ago. The nurse said it’s all the same, but I wish I had a dollar for every side effect I’ve been told won’t happen. (It’s still clicking and my arm is starting to ache.) I already take Claritin daily for allergies.

After high hopes for Taxol and Carboplatin for extensive liver mets, I’m switching to Trodelvy. For the first three weeks on T/C, everything was trending in the right direction. Then I had my week off and when I went in to the start of round 2, my ANC was too low. I got sent home with a prescription for Filgastim and was fine for treatment the next week. But the instructions on the Filgastim prescription were poorly written and I interpreted it as one shot and not four. (No one clarified this with me.) So, had to skip treatment the next week. Then everything went downhill and a CT scan showed progression but recommended confirming with an MRI—and my liver enzymes went down. But my oncologist doesn’t want to delay treatment further so Monday I started Trodelvy. Pre-meds knocked me out, but I’m feeling ok today. Took a pre-emptive Lomotil, which worked great for GI issues when I was taking Abemaciclib. My nurse told me most of her Trodelvy patients have few complaints.

Fingers crossed. For those who like background info, I’m ++-, BRCA2, ESR1, RB1 and FGFR. Got 7.5 years on Abemaciclib, Faslodex and a PIK3 inhibitor. Gave Elascestrant a 6 month try, but it didn’t work. Got several good months on Lynparza. It attacked bone mets, practically got rid of them, but didn’t stop the liver progression. Was diagnosed with Stage 2 aggressive IDC in 2013. Double mastectomy, Taxotere and Cytoxan. Less than two years on Tamoxifen before mets to bones, lungs and skin. Lung mets cleared up and haven’t returned. Skin met was removed and never returned. So there’s been good with the bad.