My 6-week check-up at Duke

Biffle, Maybelle, and I headed up to Duke at the beginning of this week for my six-week follow-up visit.  We met with Friedman and with another MD from the Duke Brain Tumor Center.  The short version of what we learned in these visits was that I'm doing as well as I feel like I'm doing, which is very good news.  I also learned some other things that weren't as important, but that some folks might want to know:

  • Friedman wasn't able to take out as much of the tumor as he'd hoped, but he still thought the surgery went very well.
  • The path report shows that my tumor has probably been there 10-20 years.
  • Although many low-grade gliomas do become high-grade, taking out a big chunk appears to reset the time clock, so it'll take this tumor a lot longer to start growing more quickly (if indeed it does--the second MD I met with, the guy who'll be my go-to person now at the Brain Tumor Center, was always careful to say "If it starts growing faster," not "when.")
  • For the next year, I'll be having MRIs every two months and visiting the Brain Tumor Center at Duke every four months. If the tumor isn't growing quickly for that year, then we'll start slowing down the schedule of MRIs and visits.  The MRIs will be done locally, which will make this process fairly easy (plus I think MRIs are really cozy).
  • Almost no research is being done into why low-grade gliomas become high-grade and how to prevent that, so that's a bummer. Biffle claims this is because the medical community is not interested in dietary matters.
  • I will probably always be on anti-seizure meds because I appear to be very prone to seizures. But the Keppra is working great with no apparent side effects, so hurray for that.
  • Mixed signals about pregnancy. Friedman was all over having more kids, although he didn't care how they came to be part of our family. The Brain Tumor Center guy was wary of how pregnancy might affect the tumor. Both MDs said to talk with a neurologist, because the anti-seizure drugs don't work well with pregnancy. It may well be that if we have Baby #2, s/he will be adopted.
  • I am allowed to have all the coffee I want.
I was going to include Friedman's extra-adorableness as part of this post, but I think it deserves its own post. Stay tuned.


Abi said...

I also LOVE MRI's. They put me in the greatest trance.

Martha said...

Well, at least you can have all the coffee you want! Alison, so glad to check in on your progress and read how you're doing!!! Martha M.