All Branch Topic (ABT) Pediatric Oncology POC D.C. area / NIH

[militaryPHYS]

Long Shot. Anyone currently in D.C. area know any active duty contacts or DOD associated (NIH) pediatric oncologists? Asking for a friend. Fibrolamellar hepatocellular carcinoma.

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[Upgrayedd]

Long Shot. Anyone currently in D.C. area know any active duty contacts or DOD associated (NIH) pediatric oncologists? Asking for a friend. Fibrolamellar hepatocellular carcinoma.

Yes

 

[Gastrapathy]

Fibrolamellar Carcinoma is not something that should be treated at Walter Reed. 75% are resectable with decent short to medium-term outcomes but they tend to be very large liver cancers that require extensive resections. These cases should be done by a high volume transplant, surg onc or HPB surgeon.

If it’s beyond that, there’s a clinical trial that’s currently enrolling that I would consider. These folks rarely can get to OLT. Chemo isn’t particularly beneficial and I don’t think they are recommending sorafinib at this point. This is all about the surgical outcome.

The three transplant centers in the area are Medstar Georgetown, U of Maryland and Hopkins. I don’t know much about them or whether they are doing pediatric surgeries.

The places with national reputations nearby-ish are UPMC and Duke. You can see transplant volumes at srtr.org

Sorry dude.

 

[militaryPHYS]

Fibrolamellar Carcinoma is not something that should be treated at Walter Reed. 75% are resectable with decent short to medium-term outcomes but they tend to be very large liver cancers that require extensive resections. These cases should be done by a high volume transplant, surg onc or HPB surgeon.

If it’s beyond that, there’s a clinical trial that’s currently enrolling that I would consider. These folks rarely can get to OLT. Chemo isn’t particularly beneficial and I don’t think they are recommending sorafinib at this point. This is all about the surgical outcome.

The three transplant centers in the area are Medstar Georgetown, U of Maryland and Hopkins. I don’t know much about them or whether they are doing pediatric surgeries.

The places with national reputations nearby-ish are UPMC and Duke. You can see transplant volumes at srtr.org

Sorry dude.

Thanks for sending. DC would be closest for family purposes, but if you’re saying the volume isn’t there it doesn’t matter. Thanks for spending the time to help.

Any details or more info on the clinical trial you mentioned? 15 cm primary, w/ mets. Unsure where they are at in discussing resectability. The immediate family is coming to grips with what that means. The extended family is helping to navigate and explain the surgical/medical options.

 

[Gastrapathy]

Search of: Fibrolamellar Carcinoma - List Results - ClinicalTrials.gov

The trial I was thinking about closed in Sept. when you are searching, they’ve dropped “HCC” from the name.

What to do depends on the degree of mets but that sounds bad. They could start at Georgetown and get a second opinion at UPMC or Duke. It looks like Georgetown actually had a pretty good Peds volume.

 

[Apollyon]

That gives me the warm fuzzies - not the Ca, but, I was a resident at Duke, and now work for UPMC!