Mother with intrahepatic bile duct cancer
- This topic has 17 replies, 7 voices, and was last updated 8 years, 11 months ago by
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Posts
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Darius…sorry, I am late on reading this. Sending my most heartfelt condolences to you and your family.
Hugs and love,
MarionDear Darius, I am so sorry to read of your Mother’s Passing but you know she is at Peace and whole again and Mother’s never really leave their children, She will always be watching over you.
Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain,
When you awaken in the morning’s hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.
For everything beautiful that you see
will bring a memory of me.Darius, I’m so very sorry to hear about your mother’s passing. I know there is a lot to do right now, but please, take some time for yourself to process everything that has happened. Come back if you need to talk. We’re here.
Julie T.
Dear Darius,
I am so very sorry indeed to hear of the passing of your dear mum. Please accept my sincere condolences. I so wish that I could say something that would help ease the pain that you feel right now but please know that we are all here for you.
Thank you as well for your very kind offer to help those who need more information on testing and stuff, that will be of help to many.
Please know that my thoughts are with you and your family right now.
Gavin
David,
I am so sorry to hear of your mom’s passing. You and your family have my deepest sympathy. Know that your mom will always be with you in your heart and fond memories.
Hugs,
DarlaDear Darius,
It is so thoughtful of you to take the time and pass along key lessons learned and offer your contact to all. I was able to tell from your posts how much effort you were putting in to make sure there was no possible treatment overlooked.
I am very sorry for your loss.
Catherine
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
dare….tons of good wishes are heading your way. Please don’t hesitate from intermittently reposting your question re: the BRAF G6464V mutation. Someone out there must have some information to share with us.
Hugs,
MarionAs 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.
dare….save travels back. You may want to investigate clinicaltrials.gov and look for cabozantinib, c-MET, foretinib, MetMAb, tivantinib. Keywords: bile duct cancer, cholangiocarcinoma, solid tumors.
The below trial has completed – is evaluating data.
https://clinicaltrials.gov/ct2/show/NCT01954745I hope for others to chime in and share thoughts and experiences with you.
Hugs,
MarionHi 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.
Hi Darius,
Welcome to the site and thanks for introducing yourself over on this thread, I know you will get a lot more responses and stuff over here. Sorry that you had to find us all and sorry to hear about your mum, but glad that you joined in with us as loads of support and help will be coming your way from everyone.
If we can help in any way we will and I know that you will finds tons of info here on the site and from everyone too. Please let us know what treatment options your mum is thinking of or has been offered etc and where they will be done. Has your mum sought a variety of opinions from different facilities as well as that is something to think about also.
Looking forward to hearing from you more.
My best to you and your mum,
Gavin
Dear Darius,
Welcome to our group. I wish the best for you, your Mom and your family. Please know we are here to listen and hopefully others who have been in similar positions can help in some way along the road. My mother has been fighting CC since Oct 2013, and although life has changed, we have learned to appreciate all the good times and stick together during the difficult ones.
Take care,
Catherine
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