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Celebrating Life after Pancreatic Cancer!

Pancreatic Cancer | Last Active: 5 hours ago | Replies (29)

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@markymarkfl

My starting point to search for trials is usually https://clinicaltrials.gov/ but there are other good ones.

I often just check the websites of prominent institutions where I could realistically travel by car (on straight interstates with tolerable traffic) or easy, affordable non-stop flights. From Central Florida, the former are mainly Moffitt and Mayo, with the latter including Houston, Atlanta, Baltimore, NYC, and Boston.

My trial was at MD Anderson, requiring me to spend 5 weeks in Houston.

It's important to speak to a human at your target institution / trial location as soon as possible. They often ghost people who send emails or leave voicemail. It helps to be "in their system," which means you've actually seen an oncologist (at least for a one-time consultation or second opinion) at that site, so you'll have an advocate with inside connections willing to refer you to the actual research coordinators conducting the trial.

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Replies to "My starting point to search for trials is usually https://clinicaltrials.gov/ but there are other good ones...."

I just met with a doctor at Northwestern for a second opinion who gave me some information on finding clinical trials. It seems the onus is on the patient to contact hospitals to see if they have appropriate trials available. Is that true? This doctor also said the process cannot begin unless treatment fails. Doesn’t that cause a long lag time in between? It sounds like I would be making contact with hospitals now in readiness of getting the ball rolling with contacts so I can be ready to initiate the process when needed.
Travel is a big question. I am presently at Rush hospital in Chicago. If I chose to go out of state, it would be difficult to be gone for so many months. It doesn’t seem like 5 weeks at MD Anderson was very long. Did you have to stop treatment early?
Thank you again for all your advice as well as your support and guidance.