June 25, 2015 at 4:46 am #88398wileygirl18Participant
Hi Crissie –
They have trials of new drugs for CC all the time, but not many. Only about 16,000 people a year are diagnosed with CC so it is not of much interest to the drug companies to do a lot of research on new drugs. They can make much more money on other kinds of cancer drugs. A real bummer. There also are not a lot of studies done on CC itself. That’s why this website is so important.
So sorry about your Dad.
At present, if one goes for chemo they use gemcidabine and cisplatin which is only effective in 20% of cases. It is frustrating and aggravating. Basically they throw you on the bone heap.
My husband is 63 and they gave him a year. We are not having chemo – using an alternative treatment instead. Hoping for the best.
All good wishes,
JeanJune 3, 2015 at 8:26 am #88397marionsModerator
I agree with Kris’s statement. At present only 45 biliary clinical research studies are conducted. However; we are witnessing an increase in CCA patients included in solid tumor clinical trials. In general, the cohort participation consists of a few patients only, but it has dramatically increased over the last few years. I want to believe that the increase of adding our patients to clinical research studies is related to genuine caring for those afflicted with this cancer and not for the reason of obtaining FDA approval for fast track designation, breakthrough therapy designation, accelerated approval, and priority review designation. The four mentioned designations allow for FDA expedited approval resulting in a speedier marketing of a drug.
I want to believe for the truth lays somewhere in the middle. Having said that, if the drug is proven to be effective then our patient community will benefit greatly. I must add that genuine physician interest is increasing dramatically. Historically ASCO presentations for cholangiocarcinoma was minimal or non-existent however; in 2015 several sessions focused on biliary cancer. By no means are we in the spotlight, but we are gaining momentum.
MarionJune 2, 2015 at 11:09 pm #88396kvollandParticipant
I agree with you. It is very frustrating. I just lost my husband a month ago to this disease…..just 9 days after we were told cancer had metastasized to the lining around his lungs. We didn’t even know until 3 days before he passed that it was for sure the cholangiocarcinoma. It sucks really bad.
The unfortunate thing is that it a fairly rare cancer and the fact is that a treatment won’t make drug companies a lot of money….they invest a lot of money into research and development that they expect a return on that….they won’t get it from cc. That is a sad things to say. However the research for our disease does piggyback on other disease treatments such as pancreatic cancer. The Cholnagiocarcinoma Foundation is investing a lot of money into research to assist with this. See the banner above for the most recent awards.
I am sorry that you lost your dad to this disease.
KrisVJune 2, 2015 at 12:27 pm #11334crissieParticipant
I don’t understand why any new cancer treatment coming out isn’t tried for cholangiocarcinoma.
It makes me so mad. My dad has been gone a year after this horrible cancer and it would have been his 68th birthday this month. I am so bitter about this.
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