January 25, 2017 at 6:21 pm #93974gavinModerator
Excellent news! Thanks loads for sharing that with us all.
My best to you and your husband,
GavinJanuary 25, 2017 at 8:19 am #93973anne-bjerkenaasParticipant
Dear Lainy, Marion and Debbie.
Thank you for your warm response.
Anne.January 25, 2017 at 4:15 am #93972debnorcalModerator
Wonderful news. Thank you for sharing and for encouraging others to have genetic testing.
DebbieJanuary 25, 2017 at 1:47 am #93971marionsModerator
Anne…fantastic news. Thanks so much for the update. We share your joy.
There is a clinical trial for extrahepatic patients, but the patient group is limited to one specific ethnic group. https://clinicaltrials.gov/ct2/show/NCT00588263
Here is an abstract on BRCA 1 and BRCA 2 cholangiocarcinoma patients:
MarionJanuary 24, 2017 at 8:31 pm #93970lainyParticipant
Oh, Anne, GREAT post! You never know what lies around the corner and I am so happy that your husband’s pain is gone. I am hoping they also find a reduction in the CC. Spring is 2 months away, a time for new beginnings and I am wishing for your husband to have new beginnings we well. Keep on keeping on!January 24, 2017 at 7:53 pm #12956anne-bjerkenaasParticipant
To make a long story short, some time during September- November the chemo Nordic Flox, https://www.ncbi.nlm.nih.gov/pubmed/14968943, stopped working: My husbands metastases, the one in his chest bone started hurting again, his cancer were growing. As I have written before, there are no other treatment available for this kind of cancer in Norway. However, also as written before, my husband were allowed to participate in a clinical trial of Ulrik Lassen, MD, Ph.D., is specialized in internal medicine and medical oncology, at Rigshospitalet, Copenhagen, Denmark, https://www.ncbi.nlm.nih.gov/pubmed/14968943 The medication given is Lynparza Olaparib, https://www.lynparza.com/ The genetic tests of my husbands cancer cells did show that he had an Atm genetic disorder, this might be the reason for him to develop intrahepatic cholangiocarcinoma, https://ghr.nlm.nih.gov/gene/ATM. The 12th of December my husband started the treatment, Lynparza Olaparib 400mg twice a day, every day. After some few weeks his chest pain disappeared. As for now we have reason to believe that the treatment is working. CT is to be taken, several blood tests has been taken, but we have not had any results yet.
The only reason why my husband got this medication is that he did run a genetic tests on his cancer, the results made him qualified for the trial. There are several treatments out there, some of it does work, some of it does not. By taking a genetic tests for targeted cancer therapy you might find a treatment working for you. Maybe fore some weeks only, or months, or years. For you, and for your loved ones every day counts….
Wish you all the best.
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