11/06/2025
Difficult news
This week marked another visit to Philly; this time included scans so it was a longer stay. I had a fun time on Tuesday with my friend and we did a hop on/hop off bus tour. We also toured the Christ Church Burial Ground where Benjamjn Franklin is buried, the Betsy Ross House and the Museum of the American Revolution. All great and very interesting!
Wednesday, I met with my oncology team to go over the results of my imaging. The bad news is my cancer has progressed. 😞 Several of my lung tumors have grown slightly. My liver is still clear, which is good news. While the growth isn’t huge, it’s enough to indicate the cancer is advancing. The clinical trial I’ve been on has kept me stable for the past 20 months. Up until now.
What does this mean? My doctor is recommending I start a new trial, to keep ahead of the cancer and switch things up for a different medication. The trial is new to the US and the drug is called Roginolisib (Rogi, for short). I will need to go back to Philly soon for screening (scans, labs and another biopsy), to determine if I’m an eligible candidate (my doctors are thinking I am but I still have to go through this process). After that, I will be randomized to either receive the study drug or the “standard of care” drugs (two drugs called ipi/nivo, for short). I had to do the same thing for the trial I’ve been on.
In the meantime, I have to go through a 4 week washout period, which means not taking any cancer meds. So I stopped the drugs I was taking as of yesterday. If all goes well, we are hoping I can start the new trial on 12/4. 🤞
There aren’t any other viable options for me at this point. If it weren’t for this new trial, I’d be put on the standard of care drugs anyway.
I’m still processing all of this and it’s overwhelming! Today, I alternate between feeling sad and scared to raging angry. 😡 🥺 If you’d like to send positive vibes, prayers or anything, please focus that I get into the trial and selected for the study drug. And please bear with me as I navigate this news. 💙🖤🦄🏴☠️
