Clinical Trials Help

Posted by kerrylc @kerrylc, Oct 4 4:03pm

Hello, everyone. I was diagnosed with stage IV adenosquamous pancreatic cancer with liver lesions this past March. After courses of Folfirinox and then Gem-Abraxane, my oncologists tell me the treatment is no longer effective, and that I should investigate clinical trials.

I'm naturally devastated, and overwhelmed with the process of researching treatment. Thankfully, I'm in Chicago so I have strong research hospitals available, but that's just in case there's a local option available. Can anyone share with me how you went about finding a trial, and how it went for you?

Thanks so much in advance!
Kerry

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Turkey, Volunteer Mentor | @tomrennie | Oct 5 12:19am

@kerrylc I have not tried this myself, but a few other pancreatic cancer patients have suggested this site:
http://www.tricanhealth.com/
Please let us know what you find. Thanks.

gamaryanne | @gamaryanne | Oct 6 8:27am

Isn’t it sad that doctors want to leave it to us to find clinical trials??

kerrylc | @kerrylc | Oct 6 12:44pm

In reply to @tomrennie "@kerrylc I have not tried this myself, but a few other pancreatic cancer patients have suggested..." + (show)

Thanks @tomrennie. I tried tricanhealth but unfortunately it didn't return any results for me. I had better luck with the PanCan Clinical Trials site that returned 26 trials.
Best,
Kerry

kerrylc | @kerrylc | Oct 6 12:48pm

In reply to @gamaryanne "Isn’t it sad that doctors want to leave it to us to find clinical trials??" + (show)

It is, @gamaryanne.

When you're at your lowest, you have to do intensive research into trials.

Best,
Kerry

stageivsurvivor | @stageivsurvivor | Oct 6 1:19pm

In reply to @gamaryanne "Isn’t it sad that doctors want to leave it to us to find clinical trials??" + (show)

@gamaryanne The issue is searching for clinical trials can be extremely time consuming. Searching for trials is not the purview of the oncologist nor the N.P., P.A. or geneticist. Their job responsibilities and time allotted does not make searching for clinical trials practical. The role of the oncologist is to provide standard of care treatments or an experimental treatment if they are involved with a clinical study. There are a couple of sites that will perform trial searches at no cost and a few that charge for their services.

gsf | @gsf | Oct 6 8:14pm

My wife has locally advanced pancreas cancer which is non-resectable. We are now at a point where we are also looking for a suitable clinical trial. We plan to search these sites:
https://www.mskcc.org/cancer-care/types/pancreatic/clinical-trials
https://pancan.org/facing-pancreatic-cancer/treatment/treatment-types/clinical-trials/
https://clinicaltrials.gov
https://www.tricanhealth.com
Does anyone have any other resources to search?

Turkey, Volunteer Mentor | @tomrennie | Oct 7 9:19am

In reply to @kerrylc "Thanks @tomrennie. I tried tricanhealth but unfortunately it didn't return any results for me. I had..." + (show)

@kerrylc thanks for the feedback. I really appreciate it. How is the application process going for you?

rstokunaga | @rstokunaga | Oct 7 10:42am

Keep fighting!
My Sheryl passed on Mother’s Day this year after 2.5 years of fighting Pancreatic cancer.
What we didn’t have to help our search for clinical trials was ChatGPT. It took me days to find the possible trials in the geographic areas that we would go for a length of time.
To test this new technology, I put the variant and all other details into Chat. What took days took 3 seconds to get potential trials. It additionally gave follow up options which could be added to a revised question to Chat. If you feel it is of help, get the upgrade cuz when you run out of free time, the info is less reliable.
Stay aggressive in your search.
The bottlenecks will be insurance (who’s paying for your initial doctor visit, etc) and scans.

val64 | @val64 | Oct 7 11:13am

In reply to @gsf "My wife has locally advanced pancreas cancer which is non-resectable. We are now at a point..." + (show)

I've found that searching the clinical trials listings of individual hospitals/cancer centers often gives you the most up-to-date info on trials that are recruiting there. Much better than clinicaltrials.gov (even when government is open) and also probably many other resources that are probably based on clinicaltrials.gov. Eligibility info may still not be detailed enough or up-to-date. Some hospitals' listings are a mess (I'm looking at you Penn Medicine. It has multiple webpages, some complete, some for individual research silos, some dead links; or the link you click on may send you to Carebox Health, which is a national search service.). But most hospitals have a single, reasonably user-friendly searchable list.

Clinical trials keep opening and closing, changing their eligibility requirements, etc.. This information is not publicly available in real time, so the only people who keep up with it are the doctors who are actually enrolling patients in these trials.