Oh man, that sucks. 
Does Tyler know?
Keep fighting, and keep thinking happy thoughts – remember, there’s always hope, no matter how bleak things seem. And enjoy the game!
I assume he does. This is more of a shock thing from my end, I think. I knew they didn’t want to operate anyway unless the tumor shrank, but this makes it sound a lot more serious.
I won’t bore you with the details of my personal experience with people keeping important information from me, but suffice it to say, I totally understand and empathize with your hurt, frustration, and even anger.
Coincidentally, I read this article about mothers trusting their gut instincts just this morning and one of the stories in it reminded me of your post.
I know your family’s been through a lot, and seen a lot of different doctors, but maybe it wouldn’t hurt to do what this woman did, and start a campaign to find a doctor/hospital that will do more for your brother?
Wishing your whole family success and healing.
Interesting food for thought, Shayna. While I’m on the record as not liking this hospital very much, the radiologists have not steered us wrong to this point and that’s where this comes from. It’s a shock to me but not the core issue: the tumor itself does not directly threaten his life and isn’t causing any pain.
My mom is very much the ‘don’t take no for an answer’ type, although this experience may have beaten some of that out of her. Stopping his chemotherapy and looking around for surgery, which could cause more break-offs, doesn’t seem like the best choice now. Even if this chemo isn’t the solution I think we have to give it a full shot, through this week, before we look at other options.
Oh I would never advocate stopping his current treatment. But perhaps it couldn’t hurt to simultaneously start sending his records around and making phone calls to see if there’s a doctor who’d be willing (and skilled enough!) to remove the tumor. Second, third, fourth opinions and all that.
Hope you’re at least enjoying the game (or the commercials) today!
Even if it cannot be removed with conventional surgery (or if the risk of a catastrophic surgical complication doesn’t justify removing it), there may be other options. It might be worthwhile to inquire about if cryoablation or radiofrequency ablation might be options at some point.
Of course, that’s not the main thing for now. Good luck. 
There are always options. If anything there are too many because there’s no standardized treatment for something this rare. I know of someone else who had a chordoma and skipped the radiation altogether in favor of radiosurgery. First things first: my brother left the hospital this evening and the MRI that helps determine the next phase of treatment is next week. I’m guessing they’ll advise more chemotherapy. I’d be happy with almost anything else, and that would not be well received at home, but we’ll have to see.
We have a very big day coming up today, and more next week. My brother had an MRI yesterday to check for tumor change, and we’ll get the results later today. In the middle of the week, a team of doctors will make a recommendation on what comes next. Fingers crossed.
Prayers-and-miscellaneous-good-vibes firing up chez twicks.
I’m still checking your threads on this.
I await good results.
Like a shitty pizza parlor when you want a slice and all you have is a 20, there’s NO CHANGE. This is what I expected, since there wasn’t any change through the first two rounds, but it’s still disappointing in its own right. So now we wait until Tuesday when the doctors weigh in. I assume the options are more chemotherapy, radiation, and doing nothing because this thing isn’t hurting him and hasn’t grown in months. I can’t say I see any indication as to which of those they would prefer. If they suggest more chemotherapy, I assume my brother would say no and I’d support him. It would be pointless from what I can tell, and he’s tired of being bald and nauseous and lethargic all the time.
Crap.
Disappointing, to say the least. Here’s hoping the docs will have something good to say.
The radiologist wants to do another eight weeks of radiation on my brother, starting NOW NOW NOW. Well, in a month or so. By medical standards I think that’s “right away.” Stop me if you’ve heard this song before:
This is a critical time (critical time!)
To prevent further tumor growth (ain’t gonna grow no more!)
The tumor borders on nerves related to swallowing (oh!) speech (ee!) and hearing (ah!)
Waiting could cause more damage, and it would be a crime! (hummmm)
The nerve: if the tumor keeps growing, it’s gonna absorb it…
Let’s make sure!
Let’s nuke it from orbit!
© George Gershwin
So, yes. Six months ago, it was critical we get something done, which, after three months of wasted time, turned out to be chemotherapy. The chemotherapy didn’t shrink the tumor and did not apparently stop its growth, since it also didn’t grow in the two months between the discovery and the start of chemo. But now it’s still a critical juncture and now we need to do radiation, which has essentially all the same side effects as the tumor and can create new tumors. The outcomes, my mother pointed out, are not good regardless. But the spot that was irradiated last summer has not been a problem, so if not for the tumor piece that broke off during surgey, he might be fine now. Of course, we can’t turn back the clock on that.
After something like five weeks we still haven’t heard anything from Make A Wish, either - they said we’d hear from them in thre weeks. If we followed the doctor’s plan, radiation would start around March 18 and both of my brother’s wishes would be tossed out the window anyway, since he wouldn’t be able to do the Allmans shows (March 10 through 28) or opening day at the Stadium (April 3). At the time we spoke he hadn’t been told about this, so I don’t know his reaction. In an earlier conversation he sounded willing to try radiation. I hope to find out this afternoon.
I freaked out pretty badly at this news and I’m still trying to figure out how I feel about it.
I can’t imagine the frustration you are going through. Are you and your parents remembering to take care yourselves too?
Crap.
I’m so sorry. Hang in there.
I’m very sorry to hear that. I am doing the heathen equivalent of praying for his recovery… OK, that was nice, but Churchill is more appropriate:
“…we shall fight in France, we shall fight on the seas and oceans, we shall fight with growing confidence and growing strength in the air, we shall defend our Island, whatever the cost may be, we shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender…”
Fuck Cancer.
thinking of you and Chemo Kid, Marley. Hope things improve.
How’s this for an about face: the Make-A-Wish folks came through! He’s getting three tickets to 10 of the 15 Allman Brothers Beacon shows next month, including a postshow dinner one night with band members TBD (and a limo ride to said dinner). He doesn’t know about yesterday’s news yet, but he knew the basics on the radiation plan and timeline and was okay with it. It wouldn’t be possible to start in mid-March while doing this, of course, but if he wants the radiation they can do it about two weeks later.
Such good news at a time we needed it very badly. I had a long night yesterday and hardly slept- now we’ve got this huge even to look forward to. It starts March 9!