Two sources of great information: PANCAN the pancreatic cancer advocacy group has much information available at: https://www.pancan.org/facing-pancreatic-cancer/patient-services/contact-us
Lets Win PC has volumes of articles about how people have survived or extended their lives at their web site: https://letswinpc.org
AND A LETTER FROM A DAUGHTER OF A STAGE 4 PATIENT: About a year and a half ago, I received a letter from a young woman who’s father had recently been diagnosed with Stage 4 Pancreatic Cancer. After reading my information at PCearlgroce@gmail.com he applied to be in the Phase 3 cpi613 clinical trial. He was accepted and they drove 12 hours each way to go to chemo in North Carolina from the Mid West. After a few rounds, a study opened up in the city he was from. Things went great for several months but eventually the drug quit working. This week I emailed the daughter to see how her Dad was getting along. This is her reply:
Hi Earl,
Glad you’re still doing well! I’m so sorry to hear about David, but WOW 5.5 years is unheard of!
Unfortunately dad passed October 24th. He went into the hospital on the 7th and never quite made it home. He had some fluid that had infection. They got the infection to clear up but I think the combination of the cancer, chemo, and all the meds he was on in the hospital was just too much for his liver.
As heartbroken as we all are to lose him, I am forever grateful for CPI-613, you for sharing your story of HOPE, and the absolutely AMAZING team at Wake Forest that made all the difference in the beginning of our journey.
Yes, we lost dad too soon but I truly believe by doing the trial we gained so much. We gained hope, and time spent together on the road (24 hours every other week to be exact!) We DOUBLED the time that the most optimistic doctor told us he would have. He turned a 2-6 month at best diagnosis into a year, And most of that year was really, really good. He poured concrete just a month before his hospitalization. He got to meet his first grandchild, hold her, play with her, babysit on occasion, and even caught some of her first milestones. He got to celebrate my sister’s 21st birthday with her. He got to see the garage go up that he and my husband had planned for years and just started on when he was diagnosed. I still share the trial with anyone I know who has been diagnosed, and look for new information on CPI-613 and how the trials are progressing frequently. I firmly believe that it is better than the current standard of care for pancreatic cancer, and I can only hope it helps someone else get some more quality time with their loved ones.
Thank you for everything, and please keep sharing your story. I KNOW we are not the only family you have given hope to in some of the darkest times. This diagnosis is given as a death sentence by doctors, and a quick internet search turns up much of the same. Your story is one of so few out there that shed light on such a grim diagnosis.
Thank you again,
CPI613, Stage 4 Pancreatic Cancer and Earl Groce, a 5+ year Journey 