Today, I have started my FIRST BLOG. Why? My purpose is to get the word out about the cancer drug CPI613. There is a lot of information about CPI613 or CPI 613 on the internet. There is also a lot of information on the internet about the company that makes the drug, Rafael Pharmaceuticals. Rafael Pharmaceuticals is currently running a Phase 3 study on CPI613. They are looking for about 500 stage 4 Pancreatic Cancer patients. The study is running in many hospitals in the USA and other countries.
CPI613 has shown great promise in early trials for Pancreatic Cancer, Lymphoma, leukemia, Burkets Lymphoma and one other cancer.
In May of 2019 I was given this up to date list of hospitals already doing the Phase III Study.
•NYU Langone Health – Paul Oberstein in NYC
•Atlantic Health System – Angela Alistar in Morristown, NJ
•Blue Ridge Cancer Care – Mark Kochenderfer in Roanoke, VA
•Ingall Cancer Center – Mark Kozloff in Chicago, IL
•Levine Cancer – Mohamed Salem in Charlotte, NC
•Wake Forest – Rocha Lima in Winston Salem, NC
•Huntsman Cancer Center – Ignacio Garrido-Laguna in Salt Lake City, UT
•University of Pittsburgh – Nathan Bahary in Pittsburgh, PA
•University Hospitals Seidman Cancer Center (Cleveland) – David Bajor in Cleveland, OH
Athens GA in Dec
Vanderbuilt in Nashville tn
FACT: I am a 54 MONTH Stage 4 Pancreatic Cancer Survivor. I was NOT a candidate for surgery. I have had 104 bi-weekly rounds of Folfirinox Chemo plus CPI613. I’m healthy, happy and enjoying life every day!
IF you are a doctor or a stage 4 Pancreatic Cancer patient considering the phase III study, all I can say is DO IT! Do it sooner rather than later because time is wasting. I signed up for the phase one study and so far, it has saved my life. I have NO REGRETS about having signed up for the first study. I pray that some of you have the same wonderful results that I have had.
DISCLAIMER: I’m not a doctor or medically trained in any way. My knowledge of CPI613 has been gained over the last 4.5 years by personal experience and by reading. I have also talked to a lot of doctors and other patients involved with CPI613, primarily about 6 others involved in our phase I study who had their lives extended by a year to 5.5 years by participating in the phase I study. May they Rest In Peace. They gave it the brave fight and enjoyed those extra months and years.
The opinions about CPI613 expressed by me are my opinions alone. But I am a BIG (unpaid) AMBASSADOR for CPI613. You would be too if you were one of the extremely FEW stage 4 PC patients to ever live 4.5 years…. about 2% do. AND, I have had a great quality of life during those 4.5 years. I’m not in failing health either! So I am trying to pay it forward by getting the word out about my life and this miracle drug and this phase 3 drug study.
This BLOG IS DEDICATED to my good friend: David Wingo. David was a larger than life, man’s man. He hunted big. He fished big. He loved big. He worked big. You might say we were joined at the Pancreas. David was diagnosed with stage 4 pancreatic cancer in June of 2014, about 15 months before I was. He was patient number 5 in the phase one study. His first CT Scan operator said “Lots of luck, Mr. Wingo” after his first scan. His first oncologist gave David 2 weeks to 2 months to live. David did not accept that answer and sought other oncologists with better answers. David found the Phase One study on CPI613 at the Baptist Hospital.
The day I interviewed with my oncologist about my options, the oncologist mentioned a patient that was having such good results that she thought this patient would be coming off chemo SOON. It turned out that patient was David. Given that information vs the other alternatives, I QUICKLY SIGNED UP right then and there. NO LOOKING BACK!
It took me months to find out who this mystery patient was but I succeeded. After a few calls and emails and texts David and I met June 5, 2017 as he was going in for one of his MRI’s. We immediately became frinds, We had challenges to see who could get the lowest CA19-9 numbers. He normally won with a single digit CA19-9. We took two trips together. David was a true HOOT.
After only 32 rounds of chemo, David came off chemo. His scans had been so good that the oncologists reviewing his results in a meeting gave his scans a STANDING OVATION. He was off chemo and apparently cancer free for about 22 months. Then some small new tumors were spotted on a scan. He went back on chemo. For many months his chemo worked. And David worked. He worked the whole time he was getting chemo. He was a building contractor that did fire and water restoration. Thanksgiving of 2019 was his turning point for the worse. He ended up in the ICU with sepsis. Then his doctor told him that nothing was working that there would be no more chemo. The sepsis made him weak and shortly after Christmas David was taken from us all. He had 70 great years. And his 5.5 year battle with Stage 4 pancreatic cancer were all great years. He is greatly missed by his wife, two children, 4 grandchildren, ME and a whole church full of people that called David a Great Friend.
CPI613, Stage 4 Pancreatic Cancer and Earl Groce, a 5+ year Journey 
Hello Earl, First, my deepest condolences for the loss of David Wingo. Dedicating your blog to David is a wonderful way to honor him. I am extremely grateful to you both, and to everyone with the courage to undergo a clinical trial. And, thank you so much for your blog!! What a tremendous resource and inspiration for PC survivors and caregivers. It will be useful for medical teams as well. When my dad was sick, I discovered how challenging it is for oncologists to customize treatment plans. Caring for patients with the current “gold standard” regimen gives them little time to explore new discoveries that could improve outcomes and change lives. It is so important to share success stories and spread the word. Keep up the good work! Wishing you and your family all the best.
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