30 year old sister with advanced CC
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- This topic has 4 replies, 5 voices, and was last updated 9 years, 9 months ago by crissie.
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February 11, 2015 at 1:23 am #86694crissieSpectatorFebruary 10, 2015 at 9:52 pm #86693gavinModerator
Hi Cleverson,
Welcome to the site. Sorry that you had to find us all here and I’m sorry too to hear about your sister.She has been through so much already with CC and at far too young an age I might add. I am glad that you have joined us here as you will get a load of support from all of us so please keep coming back and we’ll do our best to help.
I too do not know of any trials etc that are being run in Brazil so can’t help too much with that I am afraid. I had a quick look around google. Have you looked at the cancer institute of Sao Paulo? I came across their website and that can be found here –
There seems to be something at the foot of the page about trials in Brazil.
Found these as well –
http://www.accamargo.org.br/english/
Searching Brazil and Cholangiocarcinoma came up with this and I hope that this and some of these other links will be of use to you.
Please let us know how everything goes, we are here for you.
My best wishes to you and your sister,
Gavin
February 10, 2015 at 5:46 pm #86692marionsModeratorCleverson…..so sorry to hear of the developments. Personally I don’t know of any clinical trials conducted in Brazil nor do I know of a study with a Brazilian cohort arm. Do you have something like the clinicaltrials.gov website?
Additionally, you may want to contact the pharmaceutical companies supplying these molecular inhibitors through their compassionate use program. Perhaps you can do the legwork and then enlist the physician to interact with the companies. Please keep us posted – we care.
Hugs,
MarionFebruary 10, 2015 at 5:31 pm #86691lainySpectatorDear Cleverson, thanks for reposting here. I can’t help on the Trials but I know that members will be along today to try and help. I am not sure about trials in other countries. I just Googled ‘Cancer trial Drugs Brazil’ and not much came up. Have you asked your Sister’s Doctor about trials? Hang in here, hopefully someone will have an idea for you!
February 10, 2015 at 4:55 pm #10939cleversonSpectatorHi,
My name is Cleverson Silva and my sister was diagnosed with cholangiocarcinoma 3 years ago. She went through 2 surgeries and many combinations of chemotherapy. She is only 33 years old now and she is not fine, with metastasis in lungs and rib and a lot of pain. The Doctor here has no more options for chemotherapy. Genomic alterations for BRAF V600E and BAP1 V599fs*15 were identified. According to the reports, there is a FDA approved therapy for BRAF V600E for melanoma, but not for CC, and no FDA approved therapy for BRAP1.
We are from Brazil. Do you know if there is any clinical study in Brazil for CC? Do you know if we are allowed to enroll in any american research or if there is a study with a Brazilian arm?
Thank you
Cléverson -
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