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  • voyagervx voyagervx Apr 24, 2013 8:43 AM Flag

    New Entry on the Kidney Cancer Chronicles blog

    Posted on April 19th:

    When we met up with Dr. Hammers yesterday, he seemed sort of surprised that Chris was standing upright. “Have you been feeling tired lately?” As a matter of fact, fatigue has been a major problem for Chris. Yesterday was no exception, but Chris usually refuses to admit to problems with side effects. This time, however, even he admitted that perhaps, yeah, he had been a bit tired – not too much, mind you – just maybe taking four-hour naps in the afternoons, going to bed early, sleeping in late, etc. (This morning he slept in until 10 or 10:30 a.m., got up for a half hour when I made him eat some fruit and then fell asleep again until 2:30 p.m. When I woke him up again.)

    Hans nodded. “Yeah, your thyroid is in the tank. It’s almost like it’s non-existent. Like you accidentally left it at the bar and the bartender taped it up on the wall next to lost driver’s licenses in case you came back to get it. Did you do that?”

    Before Chris could answer, Hans had already moved on with a discussion about doubling, no, tripling –okay, quadrupling his dose of synthroid, which controls the thyroid.

    I could tell that Chris was still thinking about which bars we should hit to look for his thyroid when Hans pulled out the CT scans. We weren’t originally scheduled to get a scan so soon, but Chris’s breathing has been a little strained lately. He tends to run out of air when he’s talking for long periods. And, you know, he’s usually talking to me, so get used to it, right? It’s like talking to a guy who you’ve punched in the gut mid-sentence. And, sure, I’ve done my share of gut-punches on Chris but not even I rabbit punch a guy when he’s down. So Hans wanted some scans to see if we could identify the problem. We’re happy to report that Chris’s tumors are still stable. They don’t appear to be shrinking anymore, but they aren’t growing and there aren’t any new mets – and we’re very grateful for that.

    Side effects are a different story though. In addition to the extreme fatigue, Chris has been battling a lot of nausea, vomiting and general stomach discomfort. So much so that he’s lost another five pounds. Which is not good. For a lot of guys, losing five pounds is cause for celebration. For Chris, whose already lost forty he doesn’t have any extra to spare. We’re now working on a new eating routine in which he doesn’t eat meals. Sounds counterintuitive, I know. But he has trouble eating meals, let alone large meals. So instead we’ve gone to grazing, as one of his doctors suggested. He never really eats a meal, but throughout the day he snacks. A cup of yogurt in the morning, some fruit an hour later, a single serving of macaroni and cheese around lunchtime, some peanuts or a protein bar an hour or two later, etc. So far it seems to have helped. That is, at least he’s eating it. The question is whether it’s going to put enough calories into him. We’ll see.

    As we’ve said all along – Cabo is a tough drug. And because it’s still in trial, how it should be dosed is a bit of a mystery. In talking to Hans, other doctors and other patients, we think we’ve learned a bit and have a plan to try something that might make the drug more tolerable for Chris. We’re going to try a dose cycling program, similar to the way we took Sutent. As with Sutent, the toxicity of Cabo seems to be cumulative. Sutent’s answer to this was four weeks on the drug, two weeks off. We’re going to experiment a bit: As many weeks on the drug as Chris can take, then a week off. Then we start the cycle over again. We could end up with exactly the same dosage cycle as Sutent – four on, two off.

    Nobody else has tried weekly dose cycling in the trials that we know of; so far they’ve only reduced dosage levels. So we’re a little a nervous about just taking things into our own hands (though in consultation with Dr. Hammers, he agrees that this is a good move to try, which gives us more confidence). Also, a friend of ours has tried taking the drug five days on and two days off, and he seems to be doing well. So that is also encouraging.

    We’re hopeful that some of the changes we’re making are going to improve the way Chris is feeling. We have finally found a drug that has stopped this cancer’s merciless spread. Now we just have to make sure it doesn’t turn him into a teenager – a skinny guy who sleeps in his room all day and looks like a cast member from the Walking Dead when he is up. We’ll keep you posted.

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