I’m glad to hear this news. I hope that it’s the first of a string of a lot better news for your brother and your family, Marley.
Good news indeed! Keep us updated.
Glad to hear some good news!
That’s super news.
Hey Marley, an update? I’m sending good vibes your way, by the way.
Thinking of you and yours Marley, I hope things are less up in th air than they were.
They’re a little less up in the air, but not much, and thanks for the bump. I’ve been on vacation with my girlfriend for the last week, and I really needed it.
The deal is basically this: he’s probably going to get chemotherapy at NYU sometime soon. That’s the least worst option. We don’t know exactly when, or for how long or any of that stuff. It may be two courses of three weeks each. We’ll know pretty soon and they’re hopeful that, since he isn’t feeling the effects of the tumor at all, they can get it that way.
In the long run, we - at least meaning me and my parents - are trying to deal with the fact that this tumor has returned after about a year and looks unusually aggressive by chordoma standards just can’t be a good thing. I forget the name of the scale this is measured on, but his tumor is around a 30 out of 100 and chordomas are usually in the mid-single digits. Doesn’t mean these treatments won’t work, but it makes it kind of hard to be optimistic about it.
Continuing good thoughts being sent to your brother and you/your family Marley23.
Thanks for the update, Marley. I’m keeping you and your family in my thoughts and prayers.
GT
THEY’RE NUTS! THEY KNOW NOTHING! THEY HAVE NO IDEA WHAT IT’S LIKE OUT THERE! …
Sorry, I’m channeling Jim Cramer here. My family went for what they thought was a consultation at NYU yesterday but it turned out to be something more like a FedEx commercial. (‘Who’s got the package? A dinosaur or giant pigeon or some shit. Why are we paying $2 million to run this during the Super Bowl?’) My family thought they were going to find out what the NYU people have planned as a chemotherapy course, but it turns out they actually still don’t have a plan because they’ve never seen any of the scans that were done in Boston. They want to do some tests of their own and have others redone, then meet with my family again in a week or so, and then maybe a week or two after that they’ll call them in AGAIN and present them not with the drugs they think will work best, but with options from which they will decide what therapy sounds best, because hey, this is some rare cancer they got here and you usually don’t do this, so it’s not like they know from clinical research what works the best.
Why the fuck they had to go in there AT ALL yesterday is positively beyond me. When the doctors say they’re not communicating it DOES NOT INSPIRE CONFIDENCE.
So they’re off to Boston again this weekend, I think for another PET scan and some other things. Lucky brother, he gets more Ativan. He liked that stuff last time.
They did throw out some drug names. Thanks to my work background this is actually an area where I can help my family a bit - it’s why I chose my current specialty at work - but of course, these drugs are so hard to spell that even databases and Google couldn’t figure out what my mom was trying to tell me. I know for sure that she mentioned Gleevec, which is mostly used in leukemia and tumors of certain kinds of connective tissue. They also mentioned doxorubicin, a/k/a Adriamycin. Those of you who read ivylass’s chemo threads will recognize that stuff as the “red devil.” The other names were beyond me, although “alkylators” sounded rather scary.
So the doctors said this is a “golden opportunity” (exact quote) to get this tumor before anything else fucks up, but now we’re going to wait another two or three weeks before treatment starts, if not more, while they run in a circle before throwing darts at a board or something. Who needs this?
Oh my god, I’d be furious that they aren’t “communicating”. What’s the lead doc have to say about all this? I mean, isn’t time of the essence? I’d be all up someone’s ass over this to get a definite plan in place ASAP.
I’m really sorry to hear this confusion is happening. It shouldn’t be.
Oh dear lord.
Hugs to you and everyone in your brave, loving, resilient family.
Doctors suck. Money-grubbing jerkoffs, the lot of them are.
Marley23, as a fellow Discordian, you and Tyler are never far from my daily thoughts. I’ve even asked my fundie KGSMom to include your names in her prayer circles – hey, it couldn’t hurt.
Feel free to PM me at any time.
How horrible! This must be torture for everyone in your family. 
Egads. Lack of communication has become one of my pet issues - and having it involving a minor just makes it even more egregious, IMNSHO.
I hope they all hang in there, and can make those doctors get their heads pulled out of their asses.
This is some confusing shit for sure. The tests in Boston may not get done anyway - insurance may not cover them, and why would it when we had the same tests done less than a month ago?
Ok, so: Mumio, I’m not really sure which doctor is in the lead here. I guess it’s the oncologist/neurologist, who was praised to us very highly. I don’t know what his involvement with this was. I know my family met with two doctors Tuesday, and one of them took a phone call in the middle of the conversation and walked out of the room for 15 minutes. We’ve had a few great doctors in this process, but a few have been straight out of Clerks: “This would be a great job if it wasn’t for the fucking customers.” Having no bedside manner is one thing, but I would think this is not quite the impression you want to make during a first meeting.
These people are supposed to be good. Why they didn’t see the scans and biopsy results (from the old tumor and the current one) and other things that were done in Boston, I don’t know. We heard this is a golden opportunity, so I would think we didn’t need to waste a meeting and then waste a few weeks repeating tests. Maybe one of the doctors we know, Sen or the radiologist, can light a fire under these people.
I spoke to my mother about this last night and she feels NYU just wants more data, but it doesn’t exist. Chordomas are not usually treated this way. There are only a few options. There is no chordoma treatment. There’s a ton of drugs for leukemia and we may use some of them, but I don’t see how they’ll just stumble onto something and go “oh yeah, of course, THIS!” And since they say they’ll discuss options with us I don’t know why they’d expect to find that either.
Thanks KGS. I swore my brother in as a Pope 18 months ago in Boston. I might’ve posted about that way back when. Maybe we should talk about that more. We’ve had some great doctors, like I said. Without Dr. Sen I’m not sure where we’d be- and that’s considering the fact that nobody knows what’s going to happen anyway.
It’s not like this is the first time we’ve been very very confused about all this, but it’s really unhelpful now and there seem to be large steps backward.
I know it is no comfort, Marley23, but the doctors aren’t picked because they are good with people - they are picked because they are good with cancer.
True of course, and we’ll put up with plenty of crap if it works out. (My brother will complain; I’ll live with it.) But it’ll be easier to put up with it if and when the cancer skills materialize.
I am sorry you’re (all of you) going through this.
Doctors are really, really uncomfortable saying, “I don’t know.” They’re trained to look for answers and to know the answers–they’re the experts. Except when they’re not. This isn’t an excuse, but I hope it helps explain it a bit.
My sincere hope for you and yours is that you get a doctor who is secure enough in him or herself to say to you, “I don’t know. This is something so rare we don’t have standard procedures for it. But here is what I think may work. We will need to work together and be able to discuss all options.”
Maybe this Dr Sen could be that? Sounds to me like there are a whole lot of executive chefs and no Gordon Ramsay to cut through the BS. (not that you would want Ramsay-style doctoring, just saying). Someone has to be captain of the ship. Sometimes (I used to see this in ICU a lot), there are so many specialists on the case; they all are very territorial, with the converse of that being that they don’t want to go outside their are of expertise. This is usually a good thing, but the (whole) pt can get lost in the melee.
The primary care doc is supposed to act as liason etc, but sometimes that doesn’t happen. Also, you’re getting some of this secondhand, which can be problematic (not a criticism, just a fact). Is someone taking notes? Not to piss off the staff and make them suspicious of lawsuits, but seriously, to keep track of which doc said what etc.
How are the little ones?
I talked to Dr. Sen this evening, and he said what he should say: this is outside of his area of expertise and he can’t tell us much. This is the territory of the radiologists and oncologists. And different people may disagree on the best way to deal with this. They may treat it like a sarcoma or they may not, and he suggested we find out what they think about this timing issue. Right now Boston and NYU probably aren’t agreeing, or NYU isn’t sold at least. So we’ll work that out.