285 to 390

From June 12-16, I took my first 5-night round of chemotherapy.  It's the same type of chemo I was prescribed two years ago, Temodar (that's the brand name, the actual drug name is Temozolomide), it came in a 3 pill "package" that cost me a $25 co-pay for each ($75 total!), but has the added bonus of being relatively well tolerated.  Together the 3 pills added up to 285 mg, with my next dose jumping to 390, an increase of roughly 36%.  My neurooncologist advised me to take a Zofran about an hour before popping them, just to ward off any potential nausea, although I chose not to based on past experience.  2+ years ago, it was just like taking 3 vitamins just before bedtime.  Though last time I initially took my chemo every day for 30+ days, followed by 6 monthly 5 night "maintenance phases," this time I jumped right into the latter; they have me on 5 nights chemo followed by 23 off ... indefinitely.  Between chemo prescriptions I'm required to have blood work done weekly at a local (Newark) lab, with the results being faxed to the same neurooncologist down at Penn Medicine.  On June 26th the neuro told me she does expect my blood counts to dip, and then recover, but they just wish to keep tabs on how far down they actually go.  Let's hope and pray that my counts recover quickly and without any real ill effect.

Also on the 26th, I met with the surgeon who cut into my brain and his nurse.  His nurse finally (FINALLY!) gave me the thumbs up to begin tapering off the Dexamethasone pills (steroids) I've been on since surgery.  They provoked a rash across my back and some severe cramping in my calves and hands (especially the heels of my hands).  But please don't get the wrong idea, these steroids are not "performance enhancing" by any means.  In fact, the only performance enhancement I've seen since taking them has been for "moon face contest" purposes only.  That's kind of a lame way to say they make my face look chubby, though it's mostly just water weight.  Anyway, as of this blog update I've been off the steroids for just over a week and yes, my face has thankfully returned to the ugly mug it was before.  I guess it was just water weight after all. So now I only take my monthly, 5-day chemo regime (only!) plus 2000 mg of Levetiracetam daily.  Levetiracetam is the generic equivalent of Keppra, an anti-seizure med and a financial Godsend due to its being ... well, generic (= lower copays).  Oh yeah, and I take vitamins too.

Another interesting thing that the surgeon who cut into my brain told me on the 26th was that my tumor, having risen from a lower grade mixed tumor-type, has the rare-ish characteristic of being a mutant.  It goes like this: some percentage (the percentage varies depending on whose study one reads) of lower grade tumors exhibit IHD1 mutations (for all you nerds out there, the technical name of IDH1 is "Isocitrate dehydrogenase") that carry into their higher grades.  My surgeon said it was "in my favor," which I took to be a good thing, and you can be sure that the whole way home, up the Parkway and everything, I was busy rooting out every nook and cranny on my phone's internet looking for more IDH1 information.  I probably wasn't very conversational during the 2-hour ride back to Newark, but boiled down I discovered that those with IDH1 mutations tend to live at least 8 times longer than those without (again, the estimated survival advantage varies by study).  Yes, I want to live and for as long as possible.  As Kenny Chesney most recently sang, "everybody wants to go to Heaven, but nobody wants to go now."

My next round of chemo begins the night of July 11th.  It'll only be for 5 nights and I expect to tolerate it well, but something about "cumulative toxicity" (my neurooncologist's term, not mine) has me a bit concerned.  I also looked up some reliable data that told me the likelihood of developing any new cancer just from taking Temodar increases with the first dose.  Sick.  Increasing the risk of cancer just to fight it.  If only I could have been born 50 years from now they'd probably have custom tailored cancer chemo already.  Your prayers in this regard are most welcome and absolutely appreciated.