Wednesday, May 6, 2009

our work cut out for us

The visit to NIH/NCI (National Institutes of Health/National Cancer Institute) this morning was very productive, despite the bureaucracy.* We met with Doctors Chowdry, Iwamoto, and Fine. All were quick to answer questions and explain what lies ahead for Mom. Dr. Fine seemed ready to take Mom under his wing right away, and while we haven't formally settled on NIH for any aspect of Mom's treatment, Mom signed the consent form that makes her part of an ongoing NIH research project related to her type of cancer. Mom's particular type of GBM (glioblastoma multiforme) may be of the "giant-cell" variety; if this is the case, her prognosis might-- might-- be better than we first thought. Dr. Fine wants to send Mom's data to a hospital in Boston (Mass. General? if so, that's where Ted Kennedy is being treated) to have his suspicion confirmed. The doctor also pooh-poohed the fat droplet and DMC treatments. In his opinion, there hasn't been nearly enough research for patients to give those alternatives serious consideration.

Dr. Fine strikes me as a very experienced, competent doc-- perhaps a bit too quick to talk and not listen (he tended to override the questioner in his haste to convey important information; like many veteran lecturers, he didn't really check our comprehension, which is the mark of a teacher), but obviously committed to solving the riddle of GBM and other cancers. I plan to transcribe his spiel for you, since I have it on audio and he spoke at great length. Perhaps you, Dear Reader, can read the transcript and help me in evaluating the very positive tone he took with regard to Mom's case.

One of the more important points made today was that we now have to get Mom ready for the start of her in-tandem protocol: radiation and chemotherapy. For six weeks, Mom will undergo both, and intensively so. She will then enjoy about a month's rest, after which she will be exclusively on Temodar for the first five days of every 28-day period (i.e., for every lunar month). The chemo-only therapy will last the better part of a year, with Mom being evaluated periodically by MRI to see what sort of progress has been made. All three doctors noted that the tumor can never be entirely killed off; Dr. Fine noted further that, according to research, each GBM tumor is unique-- a species unto itself, right down to the genetic level, making it hard to offer patients treatment beyond the generic standard. At the same time, this discovery is good news because it alerts researchers to the need for more idiosyncratic therapies. Finding out what technique works for whom is apparently a big part of current GBM research, which brings us back to Mom's having volunteered to be part of the NIH project. I'm proud that she's doing this.

Mom and Dad will head down to Texas tomorrow afternoon. We'll leave the house at noon, and I'll drive back to tend the homestead after dropping the parents off. When they arrive in Houston, Dad will likely rent a car; our relatives live in Conroe, just north of Houston, and the southward drive into downtown for the morning appointment at M.D. Anderson promises to take about 60-90 minutes, depending on traffic. This means the parents will have to wake up very early, and Dad would rather not impose on my cousin by asking her to take off work to act as a chauffeur all day. DC traffic is horrible during rush hour; if it's true that Texans do everything bigger, then Houston might give our area a run for its money.

I'll be sending Dad to Texas with my voice recorder. If he's blown away by his and Mom's experience at M.D Anderson, then we'll have to have a quick and intense discussion about whether Mom should remain down south. If, however, it turns out that M.D. Anderson isn't light years ahead of what we've got here locally, then we'll be content to keep Mom in Alexandria, regularly visiting Fairfax or NIH for treatment and evaluation. Of course, Mom's word is the final say, since she's the one receiving treatment.

I, in the meantime, will probably use tomorrow's quiet time to type up Dr. Fine's spiel. He really did have a lot of fascinating and useful things to say.






*Having never been to NIH before, I had no idea that security was tighter than at the local military bases. My brother Sean, who met us a little later on, pointed out that the NIH campus probably stores all manner of potentially deadly viruses for research purposes, making it crucial for all visitors to present their bona fides. At NIH, you have to get out of your car, which is then inspected. You must also submit to a check-in procedure reminiscent of airport security: bags are X-rayed, and you walk through a metal detector. Once you're back in your car, you will be stopped again before being allowed to enter the parking structure for the Main Clinic, which is where we met the neuro-oncology staffers.


_

5 comments:

John from Daejeon said...

Kevin,

Your parents can take the HOV lane to save some time on I45 inbound from 5-11 a.m. and outbound from 2-8 p.m. It will take them all the way to downtown.

http://www.ridemetro.org/SchedulesMaps/HOV.aspx

You can print up a mapquest map for them detailing door to door directions.


Take care,

John from Daejeon

Alan C said...

Without any disrespect intended for Dr. Fine or any of the other competent and talented professionals who are involved in your mom's treatment:

Based on my own experience with M.D.s, your observations about the difference between lecturers and teachers seem right on the money. Medical education confers many kinds of expertise, but at the same time it has certain intellectual drawbacks.

None of which probably makes any difference when you're trying to decide what's the best thing to do for your mom, but . . .

Kevin said...

John,

Thanks, but what's I-45? Do you mean 495 (the infamous Beltway)?

Our route to NIH took us up the GW Parkway to 495 (our house is walking distance from Mount Vernon Estate); we exited at Rockville Pike and it was a straight shot to NIH from there. As DC-Metro natives since the late 60s, we're fairly familiar with the area and know quite a few alternate routes, though we're admittedly somewhat less familiar with the Maryland end of the DC-Metro spectrum.

The GW Parkway is a lot better than taking 495 all the way up from our house-- rush hour sucks here, and the Parkway has almost no traffic lights except for when it passes through Old Town Alexandria. As things stand, we're on 495 for only a short time before we have to get off again.

Alan,

I hope I didn't sound too disrespectful about Dr. Fine, but it was often hard to get a word in edgewise. He's head of NCI's Neuro-oncology Department, so as they say in the military, he has "the habit of command."

His personality quirks aside, I'd want him in my foxhole. He struck me as super-competent, very knowledgeable, and decisive. I imagine he's an excellent department head, and in the end, yes: more important than his people skills are his cancer-fighting skills. If the cancer can't get a word in edgewise, that's a good thing.


Kevin

Kevin said...

Oh, wait, John-- I'm being dense. You're talking about the Houston area, aren't you? Sorry about that; I suddenly remembered looking at Google Maps and seeing 45.

I'll pass the info on to Dad, but the latest news is that my aunt has volunteered to drive the parents into downtown. She's been in Texas since the 1960s, and has logged decades in the Houston area, so I'm going to assume she knows the best routes.

(I'll still pass the info along to Dad, though.)


Kevin

John from Daejeon said...

Yeah, the I45 that runs from Conroe to downtown Houston and near the Med Center. Traffic is pretty bad there, but getting a head start usually works out. Also, the HOV lanes are pretty deserted as people don't seem to carpool much.

I'm glad to hear/read that your aunt will be driving them. They should have no problems then.

John