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Celebrating Life after Pancreatic Cancer!

Pancreatic Cancer | Last Active: Sep 8 7:30am | Replies (41)

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Profile picture for jymurawski @jymurawski

I am rooting for you to find a treatment program that will be effective in reducing your cancer. It makes no sense that the clinical trial won’t release information on why the treatment didn’t work especially if it could help in determining future trials. I find it daunting that the immense work to find an eligible trial falls on the individual. You are such a valuable source of
information for many of us. Please keep us updated if you find another trial.

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Replies to "I am rooting for you to find a treatment program that will be effective in reducing..."

I've made in-person visits for clinical trial assessment this year to Mayo, Moffitt, MD Anderson, Sloan Kettering, Johns Hopkins, and Sarah Cannon Research (SCRI), plus a video visit to Cleveland Clinic.

The initial results were an offer at Anderson that required too much travel, and offers at Sloan and SCRI that didn't seem that appropriate or promising. There was hope a more appropriate trial at Moffitt would open in July, but it didn't.

A more promising trial (Phase 1 MOONRAY trial of Eli Lilly's KRAS G12D inhibitor) was also supposed to open in July at SCRI, but didn't start until last week (Sept 2). I was very lucky to get in! Started last week; drug is 6 pills per day by mouth; some fatigue and nausea, but overall very tolerable so far. 🙂 Much nicer than chemo!!! My eyelashes, eyebrows, and nostril hair are all starting to grow back.

Bottom line is that I didn't get far at all with "cold-call" emails or phone calls to trial coordinators I found on any of the websites. Better luck with the ones where I made in-person trips, and best results when the visit was set up by a referral from one of my existing (multitude of) doctors.

It was not easy, but it shouldn't have been that hard either. Grateful nonetheless!

Best of luck to all who are searching. Hang in there!