Update 2023-0330

"Excellent response so far!"

Let’s not bury the lead, shall we. There is good news out of the Hutch this week.

My targeted proteasome inhibitor + immunotherapy + steroid cocktail (KRd) is doing its job. The cancer is retreating!

This induction therapy, this campaign is to reduce the cancer to undetectable levels in preparation for a stem cell harvest and transplant. From earlier discussions with the docs, even if the cancer reduction is mind-boggling swift (and you know I’ve been visualizing that, as have many of you), the care team wants to see at least 3, maybe 4 cycles of the KRd cocktail before we advance to the next steps. The calendar stands as is for now.

And speaking of calendars, Jackie and I have been mindfully tracking treatments and resulting side effects to get a handle on what to expect and how we might use that information to plan activities. This is where I made another itty-bitty strategic error. I have been thinking that the first week of Cycle 2 would be similar to the first week of Cycle 1. As it turns out, the first week of Cycle 2 is exactly like the one and only week 5 of treatment. That is to say, the treatment effects are cumulative. There does seem to be something of a rhythm to the weeks though.

A Typical Week

Fridays are the big days. Morning starts with a handful of dexamethasone, a steroid that is 3X the strength of prednisone and last 3 times as long. That pairs with my morning half cup of coffee and homemade yogurt parfait. Wait. What? Only a 1/2 cup of coffee? Sadly, yes. The best part of coffee is the aroma. The medications are changing how things taste and after the first sip or two, coffee taste metallic and unpleasant. I savor every drop I can enjoy. More information about appetite effects I’ve experienced here.

When we get to the Hutch, I have a blood draw to be sure nothing has gone off the rails in my blood or my system overall before committing to the Kyprolis infusion (that’s the targeted proteasome inhibitor). So far, every infusion has gone off without a hitch. In fact, thanks to the Friday morning steroid that is just ramping up at that time, I feel pretty darn good after the infusion. We’ve had some great Friday Date Nights. Find the joy. I end the day with the $1,000 Revlimid pill (the immunotherapy part of the cocktail). I take that pill every night during the infusion period that spans 21 days.

Weekends are unpredictable except to say that it’s best not to plan too much. The Dex kicks in full force at about the 12 hour mark and holds the floor until about Monday. Last weekend I did not sleep at all on Friday night. Sleep deprivation mixed with steroids on top of cancer fatigue is an interesting combination. Jackie and I have learned to let my body do what it needs to without expectation. Mondays feel like the long-ago days of a hangover. There is general malaise and a lot of fatigue.

Tuesday, Wednesday, Thursday are better days, but this last week, not so much. The periods of feeling normal were shorter and a bit intermittent. The expected progression of the treatment is that I will feel less and less physically spunky until the treatment peaks and then the prize is that sweet, sweet remission. That is when I can expect to reclaim much of my vim and vigor over time. Absolutely. Worth. It.