Researchers Receive NCI Award to Study
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marions.
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June 25, 2011 at 7:38 pm #51052
marions
ModeratorPhyllis…thank you so very much for sharing your personal journey. It is beneficial to many and will continue to be a resource to others.
You are bringing up some valuable points. For many of those mentioned by you and other reasons The Cholangiocarcinoma Foundation was founded. You may read the below link:
http://www.cholangiocarcinoma.org/history.htmAccording to the National Institute of Health (NIH) approximately 7.000 rare diseases affect nearly 30 million or 1 in 10 people Americans. Cholangiocarcinoma is estimated to occur at the rate of 2 persons per 100.000 of all cancer patients. Low occurrence rate coupled with non existent detection methods and silent disease progression followed by difficulty of translating symptoms to disease combined greatly contribute to late stage diagnoses of this cancer.
Although, we are experiencing research acceleration, in contrast to major cancers monies dedicated to rare cancer continues to be dismal.
Within the last 3 years however, we have seen some positive changes. This cancer has reached some notoriety and is experiencing a greater surge of interest worldwide.The Cholangiocarcinoma Foundation supports this interest by attending medical conferences with focus on biliary cancer and by the means of other endeavors.
We would like to see bile duct cancer educational brochures (ours and those from others) located in each office and medical center world wide. We appreciate anyone, patients and caregivers, friends, relatives, and acquaintances to support our efforts by becoming involved in this endeavor. Gladly, we will mail to you a requested amount of pamphlets.This site is unique in that the members have established an outlet for those touched by this cancer via the discussion board for those touched by this disease. And, for many it provides education, support, and guidance not found anywhere else. Are our discussions scientifically validated? Absolutely not; nevertheless wisdom and compassion is shared freely and enthusiastically and in most instances it contributes to understanding of this disease for patients and caregivers alike.
As in your case, Phillis, information should have been readily available.
We are working hard on bringing changes about and we will continue to do so.
All my best wishes,
MarionJune 25, 2011 at 6:58 am #51051pljc
MemberMy concern began with my own personal journey from being diagnosed, thru surgery & fighting local doctors for adjuvant care, from being turned down by two radioligists until finally finding a Cancer Center that had actually treated this before & told me that although they would be using dirty data, they would have absolutely,positively, without a shodow of a doubt run radation along my resection line. My local hospital in SC did my resection & had partnered with Moffitt about the tissue. Ive already contacted Moffitt to see if they are willing to share with Duke if my Dr gets a study going. We need to be organized. Doctors need to know the resource to refer their patients to if they themselves have never treated this cancer. I didnt know a thing about Mayo’s transplants until after my resection. My Dr at Duke said that would have given me the highest survival rate. Thank you for all the info. I’m just now coming back to life & wanting to get involved in reading & keeping up with all the latest news. Take care, Phyllis
June 22, 2011 at 9:04 pm #51048marions
Moderatorpljc….Your point is well taken. More research for orphan cancers is warranted but, it has been addressed in some instances.
Although, Orphan drugs generally must undergo the regulatory development path as any pharmaceutical product it can however, be fast tracked. Dosing, pharmacokinetics and pharmacodynamics, efficacy, stability, and safety required for all.
Additionally, the government offers to pharmaceutical companies tax incentives, enhanced patent protection, marketing rights and, clinical research financial subsidization.
At times it is the government engaging in research and development.Then, we wonder, why do we not see more research for our cancer? The answers are multifold some, of which I like to address:
Accruals for clinical trials present to be difficult as the patient population is limited.
The cancers affecting large population groups guarantee huge profits to the pharmaceutical companies not something to be expected with an orphan cancer.
Genes expressed in one cancer may reveal to be similar to another causing a trickle effect of large scale research of a major cancer to another, lesser known cancer.
In fact, I believe for the majority of approved cancer drugs are usedJune 22, 2011 at 6:52 am #51049pljc
MemberWho Knows………!!!! This is great news. My Dr at Duke told me about a pharmaceutical pulling out of a research trial at the last minute. They wanted more bang for their bucks. It was especially sad when he told me how little he needed to proceed. It was more than I had. I decided then to tell anyone who was willing to listen about Cholangio. I think ‘neglected’ is a great word to describe this cancer. On more than one occasion during my journey, I can honestly say that I have felt ‘neglected’.
June 20, 2011 at 6:39 pm #51050lainy
SpectatorOMG!!!!! This brought the biggest tears of happiness to my eyes!!!! Thank you Marion, thank-you! We ARE being noticed!!!!! YIPEE
June 20, 2011 at 6:19 pm #5323marions
ModeratorGeorge Washington University Researchers Receive NCI Award to Study Cancer from a Neglected Tropical Disease
http://biomarkercommons.org/tag/cholangiocarcinoma
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