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February 17, 2015 at 12:29 am #22371MathewRParticipant
So, I had a great run with the GSK combo with ipi in between. I had ~4 months of reduction followed by ~14 months of stable disease. My latest scans from a few days ago show progression—3 new lung nodules and a new brain met (8mm). I’m otherwise (thankfully) asymptomatic and, interestingly, my existing tumors (mostly in my liver) were stable. Tomorrow I’ll have a gamma knife procedure for the brain met (I previously had one shortly after my initial diagnosis)–and I hope to start on pembro later in the week.
I did discuss pembro versus nivo with my onc. It sounds like nivo is not yet readily available and there isn’t a prevailing view that one is “better” (at the higher dosage/frequency, for ipi refractory, etc.) than the other at this point. I also discussed trials with my onc and a few other experts (supplementing my own research on these forums and clinical trial search engines) and there doesn’t seem to be an alternative that is clearly better.
Glass half full—hopefully I’ll get the so-called abscopal effect that Celeste has reported about on her blog. Obviously a time of uncertainty and anxiety—while I’m excited to have the opportunity to try PD-1 (it isn’t lost on me that the timing of my progression is fortunate with the recent FDA approvals), it is unsettling to have less options in the quiver. That said, I’m generally feeling ok about the situation. While I could certainly do without the brain met, I feel like we’ve caught the progression early. (By the way, I credit my “ok-ness” to a MBSR (mindfulness-based stress reduction) course I took last year and my continuing practice and reading in that area.)
One piece of advice for my fellow Stage IV-ers—insist on a MRI of the brain with each periodic scan, particularly if you’ve had a prior brain met. I have always done this. Insurance will sometimes push back, but your onc can appeal. That was the situation for me with these latest scans. Had we not pushed back, I wouldn’t even know about the brain met.February 17, 2015 at 11:17 am #66414buffcodyParticipant
I’m sorry to read about this, Matt. You have been doing so well for so long. But I’m happy you have some good options you can start on right away even though there aren’t a whole lot approved in addition. I admire your o.k.ness as well. You’re inspiring prevaricating me to do some mindfulness training in my “spare” time. Guess we’re in the same boat again with my recent flareup. I’ve become more optimistic about the abscopal effect as I read the recent literature I come across that cites it. Here’s hoping for some good results for you (and for me).
FrankFebruary 18, 2015 at 7:31 pm #66415MathewRParticipant
Thanks Frank–I appreciate the support. My gamma knife procedure went well and I’ll receive my first pembro infusion tomorrow.
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