Please come back to this post periodically, as I upload the transcript of the conversation in segments. As I discovered while doing transcription work in Korea, it takes me about 7 hours to write up and polish 30 minutes of dialogue. The exchange with Dr. Fine, et al., of the NIH/NCI Neuro-Oncology Department lasts about 35 minutes. I began recording this particular segment after the conversation had already begun, but the missing material is little more than introductory pleasantries.
DR. FINE (to Mom): Now that you know that there was a problem, can you date back any symptoms further than... a couple months...?
MOM: I can't go too far.
FINE: You can't go back too far?
MOM: I was doing fine, and then, suddenly, like, sixteen [i.e., April 16], I just, you know, kinda little bit lost or something. And so they [i.e., the men of the family] said, "You gotta go to the hospital." And, you know, I went to the hospital.
FINE: In the couple months building up to that, nothing? Did you notice anything?
DAD: Nothing, except for what I thought might have been something a little bit less than usual, and I was saying to them [i.e., the sons] before, conversationally, where there seemed to be less conversation-- in other words, not so much initiation, but simple answers, to the point where, historically, I would have thought, "Uh-oh, I'm in the dog house for some reason," you know, and when I asked her directly that, she said, "Don't be silly, don't even talk like that." So right away, that was out as fast as she was saying that. So it had to be something else, but nothing else happened, and I wasn't putting, if you will, two and two together until Kevin, you know, mentioned what his experience was on Thursday morning. And I'm sure that Dr. Chowdry and, uh, the other doctor [Dr. Iwamoto] mentioned to you about it. So, based on that behavior... yeah.
FINE (responding to page): Can you give me one second? I need to get this. Thanks. (Exits.)
DR. CHOWDRY: So the CT, uh, the MRI that we do after the radiation and Temodar [chemo drug] is gonna be the baseline.
DAD: OK.
CHOWDRY: That is the baseline that we are gonna compare to when we do Temodar and then get the MRI every two weeks, OK? So this [i.e., the CT and MRI images from Fairfax Hospital] is not what we are gonna look at, what we just looked at today.
DAD: 'Cause you're gonna start--
CHOWDRY: We're gonna start post-radiation; that's our baseline. So every time we go back to...
DAD: So post-radiation is when everything starts. Well, yeah, that's logical. I understand that, 'cause that's when your research starts, and that's what happens there, to see if there's been any change.
SEAN: Did you say after she's done with radiation?
CHOWDRY: (inaudible, but probably a "yes")
DAD: Now, is that the full course of radiation, or the first 42 days?
CHOWDRY: The total course of radiation--
DAD: Six months or whatever it is?
CHOWDRY: Let Dr. Fine speak; he'll fully explain it.
FINE (reentering the room): Yeah, so-- I know you've spoken to a number of doctors. Lemme kinda' just give you my perspective on this, as someone who's seen about sixteen to twenty-two thousand patients with this disease over the last twenty years.
The first thing I should tell you is that the surgery you had was outstanding. It was a superb job, and I don't think there's any more role for any additional surgery at this point, and that's saying something, 'cause we see thousands of folks from all over the country, and many times, the surgery they get is sub-optimal, and we often have to do a second surgery. But thankfully, in your case, your surgeon [Dr. Leiphart at Fairfax Hospital] did a great job, so that's important.
MOM: OK.
FINE: The kind of tumor you have is a called a "glioma," and a glioma is what we call a primary brain tumor, meaning it's a tumor that starts out in your brain. It doesn't come from anywhere else. The good news [is that] it doesn't go anywhere else. You don't have to worry about it spreading to your lungs or your belly, so that's good. But obviously, it's in a pretty important part of the brain.
DAD: Or other parts of the brain?
FINE: Well, so, that's what I was gonna say-- talk about. The problem with this tumor is it's not as simple as having a lump in your head. If it was as simple as a lump in your head, then in the hands of a good brain tumor neurosurgeon, you could just kinda' scoop it out, like a plum in a pudding, and be done with the problem.
DAD: Right.
FINE: What this tumor is actually made up of is many, many millions of individual tumor cells. Each of these tumor cells kinda' lives a life of its own, and the major things these tumor cells can do is-- first of all, they can move within the substance of the brain. They don't jump around, but within millimeters, they can kind of move in between the normal cells in the brain-- what we call "infiltrate" the brain.
And the other thing these tumor cells can do is they can divide, so one becomes two, two becomes four, four becomes eight, and that's essentially what we call the growth of the tumor.
And the pattern of these tumor cells, relative to how they sit in your brain, is somewhat analogous to... if you think of a situation where-- if you think of your brain as this beautiful lawn of grass, and each one of the normal nerve cells in the brain is like a blade of grass, each of the tumor cells is kind of like a grain of sand, and it's as if somebody threw a hand of sand on your lawn. If you keep with that analogy, what might you end up with? Well, you'd probably have a pile of sand, and that's actually what your surgeon removed, appropriately. Got rid of that pile of sand, so that, you know, 90% of the grains of sand, the tumor cells, are removed.
But in keeping with that "throwing the sand onto the lawn" analogy, what you're also gonna end up with is some grains of sand flew over there, flew over there, flew over there, and it's all mixed in, now, with the normal lawn, so that you can't even see those individual tumor cells. So if you physically wanted to remove every last tumor cell, you'd essentially have to pull up the lawn. Well, we don't want to pull up your lawn, because your lawn's pretty important stuff: it's your brain. We can't do that. so the strategy for treating this tumor is to do exactly what's been done so far. There's a pile of tumor cells-- which there was-- remove it, which in your case, that's great, 'cause we got rid of at least 90% of the tumor, if not more.
But the rest of the tumor cells now are so intermixed with important brain tissue that we don't have the luxury of just being able to take the whole thing out without causing irreversible and unacceptable damage to you. So we have to figure out a way of killing off those last few tumor cells without hurting all the intervening normal tissue.
And we've made a lot of advances in this field.
[stopped at 00:06:50; more to come]
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2 comments:
Kevin,
I have not got back and read all the posts regarding your Mom...but was that Doctor Chowdry or Chaudry? Cuz there is a Chaudry who is a nerologist from Johns hopkins who is EXCELLENT.I could tell you m ore- but if it's nott, then i'd be pretty stupid here! LOL
This Dr. Chowdry is with NIH/NCI, not Johns Hopkins.
Kevin
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