Hi, Eli and everyone,
As both a patient and in the medical field and saw my sis-in-law passed away during the last 5 days of her life with CCA ; talking to her and her husband about treatment from diagnosis to the passage to heaven;,from hospital to hospice care. I can truly understand from both sides of the coin about this disease and saw the limit of what the current medical advance can do for this disease, including clinical trial) .In short it is not that much. I don't blame the caregiver and I, as a patient, will not encourage it either but should give a clear direction to the caregiver about her/his wishes in the event that the time has come.
Either you are a patient or a caregiver, we have to know about how little we can do,and we have to accept what the outcome will be after trying our best to research,to seek, and make the best judgement base on the findings . In doing so, we we will have no regret. But if we just sit and wait for the " magic bullet" to come, I am sure it will not arrive sooner that you expected.
I am currently research on the criteria for using "Natural history" of patients as an entry point to speed up the drug development and I will make a list to post on the board ,and when it comes out, please fill it out . This what Marion mentioned before, it is proposed by NIH/FDA and will be accepted as one of the pathway to get patient input and influence for new drug development on efficacy and drug adverse action. And this is one of the way all of you can participate.
Thanks in advance.
Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.