Liver Conference

Thank you, Susan. But, there is sooo much I don’t know. I am just passing on the knowledge I have gained over the last four years. Like you I believe that early detection would be a major step in addressing this cancer. They just don’t know how to go about it. And, I believe the funding is not available including, the resistance of insurance companies not wanting to support inconclusive testing results. Also, these microscopic cells simply are not picked up by current scanning methods. Additionally, I have been told that some cancer cells lay dormant and may never mutate into tumors. But, I have hope. Science is moving forward and there is no reason to believe that our cancer won’t take on a greater role in further research studies. I am just impatient. I want it to happen “yesterday.”
Best wishes,
Marion

Lisa…it is not only our cancer suffering from neglect in research. In fact, The Cholangiocarcinoma Foundation is a member of NORD. We are one of 10 thousand rare disorders although, most are not as difficult to treat.. Cancer to this date still is a difficult disease to treat, as cells mutate quickly and adapt to new circumstances. Bile ducts carry the toxins from the liver therefore, these cells inherently are difficult to penetrate and destroy. As they say: kill the cancer and preserve the host. But, as we have seen in your instance, current medications are successful at keeping things at bay something unheard of 10 years ago. Presently, we see a multitude of therapies involving multiple agents rather, than one, single, therapeutic agent used for treatment. Improvements have come about but, we want a cure and an early detection method. And, we need more emphasize directed to orphan cancers. The current rulings for clinical trials are too restrictive for our cancer. The process of approval needs to be sped up and regulations need to be eased in order to allow for quicker research results.
Hugs
Marion

You are touching something dear to our hearts. Yes, there is way too little attention given to this disease. The Cholangiocarcinoma Foundation had been founded for that reason only. In fact, you may read up on it by going to “top bar” scroll to “history.” We try to have representatives at most major medical conferences and I am an advocate on the North American Hepatobiliary Task Force. which is composed of specialists from all major institutions in this country and Canada and the National Cancer Institute. The consensus is worldwide in that rare cancers do not receive enough funding for research and this feeling is shared amongst physicians and researchers alike. My attendance at the Research Advocate Leadership Forum in Philadelphia had me come away disappointed in that I realize that current system for clinical trials does not significantly impact our patients. Much more attention is given to other major cancers such as, pancreatic, lung, prostrate and breast cancer. However, pancreatic cancer although, receiving millions of dollars for research also has not has not experienced any significant positive results for the patients. We can take comfort though in acknowledging the fact that CC patients are able to live longer than the had in the previous years. I put much hope in the biorepositories currently being established by the NCI which will grant researchers easier access to tissue samples obtained from cancer patients. The legal issues have been overcome in that it has been ruled for tissue (including blood samples) are not the property of the patient rather, once removed, become property of the institution. This development will open the doors to easier access to tissue obtained from cancer patients and therefore will encourage increased research.
I am with you. We need more and we need it now.
Best wishes,
Marion