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Pancreas Cancer

clinical trials was posted 07/01/2009 11:07 am by caregiver
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Finding/evaluating/joining clinical trials is very frustrating. I found the NCI website [www.cancer.gov] to be very useful in finding trials bec. you can find info for your stage of cancer, etc., sorted by location (important bec. you usually need to be able to travel for treatment, once a week). Note none of these lists are perfect. You should try to get advice from your own doctor, but I did not find that helpful. And you need to contact the person listed for the trial. Some of them are more helpful or more responsive than others. You also need to look at the study requirements and exclusions for participants (it helps to have recent bloodwork to check these requirements). You don't want to waste time trying to get into a study you don't qualify for.

The biggest problems for me, delaing with stage IVB cancer, were trying to decide on a trial and then the delay in its start. There is a group of trials for people who haven't started treatment yet. I found our oncologist of limited help and there didn't seem to be time to try to find someone better and I didn't know how to do that. I looked as much as I could on-line to try to see what previous experience there was with the drugs for the various studies.

And then there is delay in getting into the trial and in the meantime the cancer is probably spreading. Everyone told me we should try to find a trial, but we didn't get the first treatment until 5 weeks after diagnosis. It may turn out to have been better to have gotten standard treatment.

It is all very confusing and difficult. I wish you well in your search and esp. your treatment.

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
FULL DISCLAIMER


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