dare
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Hey guys, my mother passed a few days ago. Dr. Javle did an amazing job.
It’s hard to say if the study drug had a chance to work unfortunately because of complications. Thanks to everyone here for their help and support. I probably won’t be checking in as often, but if anyone needs some help with medical terminology, MD Anderson, genetic testing or other options please message me and I’ll follow up via email within a day. I know too well how quickly this cancer can move so time is of the essence.
I will say it can be difficult with all the teams involved at any hospital unless you have a patient advocate. Learn the system and build a team across disciplines. This is especially critical if or when there are complications
The hardest thing I think is getting people aware of the foundation before it’s too late. Making genetic testing the first step and figuring out the right way to target the weaknesses of this cancer.
Darius
As an update we’re going to join a BRAF study using Vemurafenib. Dr. Javle thinks this is the most targetable right now.
Thanks for the ideas marions.
The mutation my mom has in BRAF (G464V) is less common than the V600e so if anyone is familiar with it or has seen any research papers with effective treatments really appreciate it.
After surgery her cancer was completely clear until it reappeared. I believe there was lymph node involvement as when they removed the section there was still some margin with cancer.
No neural or vascular invasion, and the surgery was done at Johns Hopkins. The symptoms were actually for gallstones and the cancer was found incidentally while looking.
Hi everyone, things have been moving fast. We’re at MDACC now with Dr. Javle. He’s been great. The cancer has doubled in size over the past month. We ordered the foundation medicine report and here are the preliminary results:
DO: Pancreatobiliary carcinoma (NOS)
Status: Pass
Alterations:
BRAF G464V mutation allele frequency = 22.0%
CDKN2B loss copy number = 0
MET amplification copy number = 8
CDKN2A loss copy number = 0
SMAD4 loss copy number = 0
GATA6 amplification copy number = 9
KDM6A deletion (no mutation allele frequency available)There’s a MET clinical trial here that she might be eligible for, need to find the trial number.
If anyone knows of clinical trials targeting the above mutations please please, let me know.
@Iowagirl about to jump on a flight will try to respond when I land.Thanks everyone.
Hey all, contacted NCI about this clinical trial and they said the start date has been pushed to late July. Unfortunately it seems like there isn’t a contact PI or even system in place for patient intake past the July 1st launch date.
I’m sure there will be more developments in the next couple weeks and we’ll have more to go on.
It’s awesome the foundation is an endorser!
Here’s a search I did to find the term cholangiocarcinoma in poster presentation. Found 15 of them with a couple discussing treatment methods.
