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Help Finding Clinical Trials

Pancreatic Cancer | Last Active: Sep 5, 2023 | Replies (58)

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@stageivsurvivor

Finding a clinical trial can be a daunting task requiring perseverance. Precision Medicine (molecular profiling by Next Generation Sequencing [NGS] and liquid biopsies) to reveal possible gene mutations driving the cancer helps in narrowing the focus for using Targeted Therapy directed at the mutation. Even with that info, searches can be daunting reading through the scope of the trial and the inclusion/exclusion criteria.

Besides clinicaltrials.org, PanCan.org has a search page and case managers you can call (877.272.6226, M-F, 7:00am-5:00pm PT) that work with staff at CancerCommons.org to do the time consuming work in narrowing down the list of potential trials. LetsWinPC.org partners with EmergingMed.com that also has a staff you can speak with to get more clarification of a specific trial. myTomorrows.com is another clinical trial finder service and the staff takes it a step further- they will help with the enrollment process making the phone calls to principal investigator/ clinical trial nurse coordinator so everything is done and a potential participant just needs have an eligibility exam and to read through and give informed consent. All the services through the above search firms are free of charge.

From personal experience, I had molecular profiling done early on. That allowed me to focus my search. Still it took 14 months to find the perfect fit between between aspects of my case and the trial. I searched clinicaltrials.gov and PanCan.org weekly. As a former cancer researcher, I also was perusing the American Society of Clinical Oncology website one weekend as their annual meeting was underway. I saw an abstract just posted of a “proof of concept” trial detailing the results of the two participants. The abstract hinted a clinical trial was to result from the data.

I called clinicaltrials.gov and they knew and had nothing about it. Same for PanCan.org. So using the internet, I found contact info on the first author of the paper and called PanCan.org if they would call and make the introduction about my case. They did and that led to being the first enrolled in the trial and going on to have a complete response, achieving NED status 6.5 years ago and recently being declared cured using chemotherapy 10.5 years after having stage IV disease.

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Replies to "Finding a clinical trial can be a daunting task requiring perseverance. Precision Medicine (molecular profiling by..."

To Stage 4 Survivor
Had your cancer metastasized to liver ? My husband’s has and after 7 cycles of Gemcitabine and nabpaxitel with pamrevulab as the investigational drug his tumors have started to shrink and his CA 19-9 is at 298 from over 4500. Lots of platelet issues now and reduced dosages so always looking for what is next. No resection possible.
Thank you so much for all that information !

I need to call PanCan. I am some what involved. I attend survivor meetings and I did Purple Stride last year. I'm planning on doing it again this year.

I think my case is a little unique. I had cancer on the tail of my pancreas. Stage 2b After 6 months of chemo I had a clean PET. But over time my CA 19-9 started to creep up. I had another PET and showed a recurrence at the site where I had the surgery. More chemo almost a year and some radiation. Clean PET once more. Two months later back again in the same exact spot. I had another round of radiation and just started chemo Nov 7. No signs of it spreading anyplace else. So trying to find clinical trials has been extremally difficult.

why isn't this FDA approved yet for pancreatic cancer?trails were 6-10 years ago and still no FDA approval.What was the trail for?

which trial did you do?

What gene mutation did you have and what drug did you take in your clinical trial? My husband has the KRAS gene and two other mutations.

Good news. Thanks for sharing your journey!