Cycling off Cabo didn’t work as planned

So much for my brilliant plan about cycling on and off Cabozantinib.  Turns out it was a bit of a bust.  I felt pretty proud of myself too because Dr. Hammers said it was exactly what he would recommend – he even made a joke that in another life I was a doctor.  “Or in this life,” I countered.

After only five days off the drug, Chris hasn’t been feeling better though.  In fact, he’s been feeling considerably worse.  And that’s with the new, quadrupled dose of thyroid medicine.  The fatigue has been harsher, cough more ragged and his breathing more haggard.  This morning he came down and, after a coughing spell, couldn’t speak for a few minutes while trying to catch his breath. Which makes me panicky and so I start pelting him with: “How’re you feeling, are you ok? What’s going on? Speak up!”  I was starting to formulate plans to get him to the hospital when he finally answered that, yes, he was ok (generally speaking).

We can only speculate what’s going on, but he might be experiencing a “flare.”  Sometimes, when patients stop taking a drug like Cabo or Sutent, their disease starts to grow rapidly or “flare up.”

Not all patients experience a flare when they go on and off drugs.  It’s something that’s been studied quite a bit in terms of Sutent, since they use on/off cycles for that drug – but of course we know nothing about this drug.  For folks using Cabo, this isn’t a warning; it’s just some information I want to pass on since we are all new to this. It certainly made sense to try a proven strategy that has worked with another, similar drug. But, for us, it didn’t work.

So we’re dropping the cycling idea and going back on Cabo early. We are also doing a short course of steroids to try to get Chris feeling back up to par.  I just hope he doesn’t try to eat my leg again…

Thanks everyone for your prayers and support. I know a lot of you are watching how Cabo plays out. We’ll try to keep you updated, at least from our experiences.

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