Today I agreed to do an interview with Allison Smith of WGHP, Fox 8 in High Point NC. She had seen the presentation that the Baptist Hospital Communications Department had distributed to several news channels. We met at Oak Hollow lake, a park in High Point, NC. The interview was 15 or 20 minutes. It got trimmed to this article that captured the meat of the interview. Why did I do this interview? Two reasons: to give hope to patients that think there is no hope. The other reason, is CPI613. CPI613 saved my life, of that, I’m positive.
today, I rang the victory bell in the Baptist Hospital Comprehensive Cancer Center. Normally patients ring the bell when their cancer regiment is complete. I rang it to celebrate my five years since being diagnosed with stage 4 pancreatic cancer. I had planned to ring it back in January. But, my good friend, David Wingo had recently passed away and I just could not do it then.
Next, is an article published by the communications department of the Baptist Hospital in Winston-Salem NC.
today, September 30, 2020, is my FIVE YEAR anniversary since being diagnosed with stage 4 pancreatic cancer.
Its been five great years. I’ve gotten to see my fourth grandchild come into this world, River. I’ve gotten to see my son, River’s father, get married and I was honored to stand as his best man. I’ve gotten to see my three older grandchildren grow up to be super young folks. I’ve gotten to take three more trips to burning man. I’ve gotten to take my whole family to yellow stone park. I’ve gotten to take many trips with my wife, Juanita and various other members of our family.
IT’S BEEN FIVE GREAT YEARS!!!!!!!!!
August 6, 2020, Rafael Pharmaceuticals announced that they had reached the goal of enrolling 500 patients into their phase three study of CPI613 (devimistat) plus modified Folfirinox in the treatment of Stage 4 Pancreatic Cancer. I also hear that the recruiting process took about a year and a half less than was expected. Congratulations Rafael Pharmaceuticals!!!!!!
See this article: https://www.globenewswire.com/news-release/2020/08/06/2074264/0/en/Rafael-Pharmaceuticals-Achieves-Target-Enrollment-of-500-Patients-in-Pivotal-Phase-3-Trial-AVENGER-500-of-CPI-613-%EF%B8%8F-devimistat-for-Patients-with-Metastatic-Pancreatic-Cancer.html
CPI613 can still be made available through compassionate use. Have your doctor download and fill out the forms. And other options can be found at PanCan.
TWO years ago, in May of 2018, my friend David Wingo and I sat for short professional produced videos. The purpose of the videos was to show to potential Doctors, Hospitals, and Patients to encourage them to join in the Phase Three Study of the combination of Folfirinox in conjunction with the test drug CPI613. Of course, the videos were not for advertising purposes as the drug CPI613 has not yet been approved by the FDA. But, If you are a stage 4 Pancreatic Cancer patient, please consider joining the Phase III study of CPI613 for your sake and sake of future stage 4 pancreatic cancer patients.
My video; https://vimeo.com/285413029
Password is: cpi613 No caps no spaces.
David Wingo video: https://vimeo.com/285413246
Password is: cpi613 No caps no spaces.
This Blog is dedicated to my friend David Wingo. David survived Stage 4 Pancreatic Cancer for 5.5 years as patient #5 of our 20 patient Phase I study.
Earl Groce – Pancreatic Cancer Patient
A clinical trial helps Earl Groce on a successful pancreatic cancer journey.
In September 2015, Earl Groce’s cross country trip to the Burning Man festival in Nevada was coming to an end. Midway through his trip, the power steering in his camper failed and made the drive back to North Carolina much more difficult. As a result, he was having pain and worried he may have a herniated belly button. Earl decided to seek his physician’s medical advice.
After a physical examination, CT scan and a biopsy, Earl’s doctor confirmed the worst. What Earl thought was a sign of a herniated belly button was actually a Sister Mary Joseph nodule, which is a palpable nodule protruding from the belly button that indicates cancer in the abdomen or pelvis. Earl had stage IV pancreatic cancer that had metastasized to his lungs, liver and peritoneum.
Left speechless, Earl had his physician relay the message via phone to his eldest daughter, a surgical oncologist in Canada. She immediately began searching for hospitals and physicians in North Carolina with expertise in treating pancreatic cancer.
That research led Earl and his daughter to Wake Forest Baptist Health’s Comprehensive Cancer Center, the only National Cancer Institute-designated Comprehensive Cancer Center in the Piedmont Triad region and one of only 51 in the country. Studies show that patients who receive care at an NCI-designated cancer center can improve their long-term survival rates by up to 25%.
Upon coming to the Comprehensive Cancer Center, Earl was offered treatment options that included a phase I clinical trial for CPI-613, a targeted therapy aimed at cancer cell metabolism. Patients enrolled receive the test drug, CPI-613, in addition to FOLFIRINOX, a combination of chemotherapeutic agents.
“Pancreatic cancer is very aggressive, and patients who present with the cancer at an early stage are a minority,” says Dr. George Yacoub, medical oncologist and Earl’s primary oncologist at Wake Forest Baptist. “Those with early stage pancreatic cancer can undergo surgery to remove the tumor, but for patients like Earl, who presented with advanced Stage IV pancreatic cancer, an operation was not in the picture. Patients with Stage IV pancreatic cancer typically only have a five-year survival rate of 3%. Clinical trials are encouraged to see if a new treatment is more helpful than the standard of care regime.”
Earl decided that the clinical trial was the best option for him. Today, four and a half years later, he continues to do remarkably well, with his CT and MRI results continuing to remain stable. Beyond surviving, Earl says he is thriving and has maintained a great quality of life during his personalized cancer treatment. He has been able to do what he loves most—travel with his family. He credits his successful cancer journey to the clinical trial and his compassionate cancer care team.
“The cancer care team at Wake Forest Baptist are all wonderful folks who do the most serious work, but they are always careful, kind and professional,” Earl says.
Due to COVID-19, Earl remains in close contact with Dr. Yacoub about his treatment plan.
“For most patients undergoing cancer treatment, the risk from not treating the cancer tends to be higher than the risk of COVID-19,” says Dr. Yacoub, who notes that, for now, Earl’s treatment plan has not been affected. “Delaying treatment can change a patient’s prognosis and even life expectancy.”
To help those who are older and immunocompromised, Earl urges the community to take social distancing and stay-at-home orders seriously, to only go out when necessary and to wear a mask when out in public.
Even with the added stress, Earl remains positive and keeps busy advocating for pancreatic cancer clinical trials and sharing his journey through his blog that can be found at CPI613.com. He looks forward to the day when COVID-19 is no longer a threat and he can resume traveling with his family.
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:
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,
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.
PanCan is a Pancreatic Cancer Advocacy Group. Click the link below to see the article: https://www.pancan.org/stories/survivors/stage-iv-survivors-ongoing-clinical-trial-success/
PanCan is a Pancreatic Cancer Advocacy Group. Click on this link for the article: https://www.pancan.org/stories/survivors/years-later-stage-iv-survivor-continues-mission-to-spread-hope-and-create-memories/