Updates: Clinical Trial - Nay! Gem/Carbo - Yay (hopefully)
So scans a few weeks month ago showed progression of the cancer. Most of the progression is in the liver - which is not looking great, but is still functioning pretty well. My bones (vertebrae, a rib, sternum, skull met) also lit up more than previously, but luckily I have very little pain there and CT shows nothing imminently worrisome. The liver is my bigger problem from a tumor load stand point, but my lungs do not want to get with the program, even though the pleurodesis worked and CT showed no tumors or other changes. I was lucky to get almost a year on Trodelvy, but of course I would have appreciated more.
The last month has been a bit of a whirlwind as I screened for a clinical trial. The drug, DB-1310, is another antibody drug conjugate, similar to Trodelvy, with a different target (HER3) but similar drug attached to it. And even though both my local oncologist and I both brought up that Trodelvy was listed as disqualifying, the clinical trial doc was sure I could get in. Guess what? After a month of screening tests and waiting, no go. We're all frustrated to say the least (even my normally unflappable oncologist). I think we both cursed for the AI note taker. Oops.
Needless to say as soon as I was off the phone with the clinical trial Friday, I called to get in and hopefully get started on Plan B. One thing I love about my local practice is their responsiveness. I was in Monday for discussions with my oncologist, bloodwork, and a CT-A (no clots, no changes to the lungs). And yesterday I started on a chemotherapy regimen of gemcitabine+carboplatin or gem/carbo for short. I may have asked them to bedazzle me yesterday. Joe and Mom were there watching me like a hawk for any reactions, but made it through. As always, super grateful to have family support! The bad news is this regimen is day 1 and day 8 of a three week cycle, the good news is it's much faster than Trodelvy. Or it will be once drugs don't have to be shipped in and FedEx delivers them to the hospital next door... Day 8 will be super short b/c it's only one quick premed and 30 min for the drug. That's a win.
What else? My breathing/hypoxia continues to get a little worse week to week, which ugh. I'm sleeping with oxygen now, and I've been using with exertion for the last few weeks or so. Pulmonology is a bit at a loss as there are no changes on CTs. He has some tests he could run, but for now that plan is to see if chemo helps and regroup in a couple weeks. Shout out for the doc's in depth phone call less than 24 hours after a MyChart message- above and beyond.
In the meantime, been doing a lot more reading and traveled to Mexico. Have done a couple walks in the woods (with oxygen) and followed that with a beer at a local brewery, something we've always liked to do, and I'm happy we can truncate and still enjoy! Happy to still be working on the METAvivor Board - we have our Stage IV Stampede coming up Oct. 6-7 in Washington DC (you can still register and we will draw for $600 scholarships at the end of the week so register now!). And the Peer to Peer Support program is adding some new activities- peer leader drop ins and a workshop in October. I'm working on recording videos and setting up a fully online, asynchronous MBC education course for Project Life, basically modifying the one we did using Zoom meetings so there are other options. If you're interested, and an MBC patient or caregiver head over to Project Life (we're also looking for mentors!). If you're not an MBC patient or caregiver, you can receive our newsletter and donate :-) Waiting on an abstract disposition for the San Antonio Breast Cancer Symposium as well! I love my advocacy work, and this whole cancer thing is really starting to cramp my style :-(
So that's about it here. Haha. Adjusting and trying to focus on what I can do...and figure that out as I go. Some days are better than others of course, mentally and otherwise. Happy to have a good therapist and be back on my normal SSRI (they made me switch for the nonexistent clinical trial gr). Also, this weather is fantastic. 10 out 10.
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| Early after pleurodesis I did get a short hike sans O2. |
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