Clinical trials and advocacy
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Rick…..already you have made an impact on the CC community by sharing your experiences and by giving advice to others. The PSC community especially needs to be made aware of this cancer. As far as I know 30 % of PSC patients eventually progress and develop CC. Your thoughts regarding the liver transplantation are of much value and I thank you for you persistently bringing it to our attention. In fact, your comments and those of Ashley and Raye have prompted the CC Foundation to dedicate a link specifically to transplantations. This is a good start with plenty room to build on. What I am trying to say dear Rick, is that you are doing much already. As you have mentioned, work, family and recovery take up much of your time. You have my admiration.
Best wishes are coming your way,
MarionMarion, A BIG CONGRATULATIONS AND A BIG THANK YOU for your involvement in the steering committee.
Is there a place for some constructive criticism and suggestions from users of the cancer system?
i really feel that we need a much more coordinated effort among doctors to pool the patients with each of these rare cancers. There needs to be a national registry of who the patients are, and who the docs that know about these cancers are and what they offer.
Not only would this help the patients find the right care (diagnosis, treatment, trials, etc.) much more efficiently than they can they way things are now, but it would also allow for clinical trials to gather more patients.
The system now is totally random. It is amazing that such a life-or-death thing can be so hit-or-miss.
Please do report back on anything you can from this important work.
And I cannot tell you how incredibly helpful this website, forum and Foundation have been to us in my mother’s experience. Without you all, I do not know ere we would be today. The Cholangiocarcinoma Foundation and its work really are a great model for advocacy.Marion,
Thank you for this post. Your observations are very good and your point regarding Pancreatic Cancer is well taken. Although my time and energy are very well divided between work, family, and recovery from chemo – if there is something more I can do to advance the cause I would like to try.
I am considering asking for memorial contributions to medical research at my funeral someday (hopefully later rather than sooner!), either to PSC or cholangiocarcinoma. I know that is one small way to contribute. I also believe that this foundation is a great start and people are finding their way here for help in finding treatment. If enough knowledgeable people are available to help provide direction here, that is a good step in the right direction as well. I am particullarly passionate about helping others who might be able to use liver transplantation as a treatment option, and those that progress to cancer as a result of PSC.
So – I can understand the lack of advancement in treatment for cholangiocarcinoma and the lack of research – but I do understand the reasons why. Thank you for pointing them out.
Rick
This is in response to your comments Rick, regarding the lack of research for the disease of Cholangiocarcinoma. I so much agree with you.
Fifty years ago, the National Cancer Institute supported the clinical trial cooperative groups. These groups play a key role in developing new and improved cancer therapies.
Within the 10 cooperative groups clinical trials are conducted through networks of cancer centers and/or community oncology practices throughout the U.S. About 25.000 patients and thousands of clinical investigators have participated in clinical trial studies annually.
Concerns have been voiced regarding the effectiveness of these groups and a review of the Cooperative Group Program has been requested.
http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-trials-cooperative-groupIn response to these developments I had been asked to join the Steering Committee Advocate Involvement in Clinical Trial Coordination annual face to face meeting, Washington, D.C.
Much of the discussion focused on the operational efficiency of the working groups, the institutional review boards, and as it was most pertaining to my attendance, the goals for the Patient Advocate Steering Committee.
As mentioned before, I believe that the entire system of clinical trials is antiquated and is in dire need of revamping particularly, in the area of rare diseases. It is believed that only 30 % of all patients respond favorably to the current cancer drugs. This alone is enough reason to overhaul the system. In our case, progress comes slowly in fact; it appears to be moving at a snail
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