I post these updates to inform and to offer hope to folks that may THINK there is no hope. GREAT PROGRESS IS BEING MADE… Seek it out and take advantage..
Its been 30 months since my doctor told me you probably have Stage 4 Pancreatic Cancer. Two weeks ago, Juanita and I spent a week in Cancun with our family. WE BOTH went Scuba Diving with our friend from Burningman and camp leader, Andy.
Below is a link to an article I got posted to PanCan, a Pancreatic Cancer awareness group. Im trying very hard to get the word out about this experimental drug that has Allowed me THIRTY WONDERFUL MONTHS… and hopefully, many more. There is supposed to be a Phase II study of this drug starting in July or August this year.
Below is another article about my New Friend, Patient #5, David Wingo. Come June, He will be a FOUR YEAR survivor of Stage 4 Pancreatic Cancer. He is also trying to get the word out about our drug that has given him almost FOUR wonderful years. He works full time, except when he is hunting or fishing or getting chemo.
Below is an article I presented to “Lets Win PC” another pancreatic cancer education group. Its 2300 words… found out they want a max of 900. They will make suggestions.
My name is Earl Groce. I am a 70 year old, 2.5 year, STAGE FOUR Pancreatic Cancer Survivor. Being a Stage Four PC patient, I was not a candidate for Surgery.
I have said many times that I just may be the luckiest stage four pancreatic cancer patient to ever live.
MY STORY: I was diagnosed Sept 30, 2015 at the Rowan Memorial Hospital in Salisbury NC where I was born in 1947. My diagnosing doctor and I only met twice. Once, was the day I met him, because my young nurse practitioner I normally saw was out of town. I told him that I thought I had a herniated belly button. After examining me the Doctor suggested I get a CT scan that afternoon. The CT scan operator told me after it was over to go see my doctor again the next morning even though I had no appointment. At my second meeting, my doctor told me that I probably had Stage 4 Pancreatic Cancer. The CT scan had shown large 2 inch tumors. One was in my Pancreas and one was in my Liver. Plus, the scan showed smaller multiple tumors in my Lungs and Fatty Tissues. He set me up with an appointment the next day for a biopsy. It turns out that what I thought was a herniated belly button was actually a “Sister Mary Joseph Nodule”. This nodule appears in the belly button looking sort of like a walnut. The nodule is actually an OUTWARD sign of INTERNAL cancer. For my biopsy, the doctor simply sawed off the top of this nodule and sent it off. It was hard as a rock and he really had a hard time cutting a slice off it with his razor sharp scalpel. The Biopsy confirmed Pancreatic Cancer. I had told the diagnosing doctor that I had normally had pretty good luck, but I felt my good luck had just run out. HOWEVER, I was actually VERY LUCKY to have had a very experienced GP that immediately recognized that I probably had some sort of internal cancer instead of my own diagnosis of a herniated belly button. Many patients go for weeks, months and even years with a missed diagnosis of our cancer. Luckily, my initial diagnosis took less than 24 hours.
I’m also VERY LUCKY to have a daughter who is a doctor with years of experience with Pancreatic Cancer patients. I texted her a message to call my diagnosing doctor. She immediately reassigned all her appointments to her partners and came home to be with me to help guide me with my initial treatment and doctor selection. My daughter immediately started calling medical experts in my area that deal with Pancreatic Cancer. Her research pointed us at a young, aggressive oncologist at the Wake Forest Cancer Center in Winston Salem NC, Dr. Angela Alistair. Luckily, this hospital is a teaching, research hospital that is 20 times bigger, and 20 miles closer than the Rowan Hospital. AND, luckily, Dr. Alistair was looking for 18 participants in a phase I Clinical Trial for a new cancer drug called CPI613. The study was also sometimes called a dosing study. It turned out later that (luckily) I was one of the last patients to get into the clinical trial. I’ve heard all my life about pancreatic cancer and knew that things did not look good for me. After hearing about all my options, I asked two questions of Dr. Alistair: #1. Do all the patients get the experimental drug? She said yes. #2. Would it turn me purple? She had a puzzled look but said NO, it would not turn me purple. I quickly signed to participate in the clinical trial.
Doctor Alistair, my daughter the doctor and our study nurse worked very hard to get me set up quickly for my first chemo. From the date of initial diagnosis, to my first chemo was only two weeks. In those two weeks, I got a port installed, initial blood work, another CT Scan, my first MRI and a trip to Walt Disney World with my daughter, her husband, my wife and three grandkids.
The clinical trial consists of two Chemo’s: #1: a slightly reduced amount of Folfirinox. #2: The trial drug CPI613.
I receive chemo every two weeks. On Tuesday, I get the main dose. I wear a pump for 46 hours getting “5FU”. On Thursday, they remove the pump and give me another shot of CPI613.
Two years ago, there was very little information on the web about this new drug. Today, you can GOOGLE “CPI 613 pancreatic cancer” and find a lot of information. A lot of the information is based on results of our clinical trial that started about four years ago. You can google “CPI613 700 club” and see a video article telling about how it is supposed to work. You can google “CPI613 earl groce clinical trial” and see an article about me written by PanCan, another organization trying really hard to beat this Dread Disease. BTW, they suggested that I also post here. You can copy and paste this link to your browser to see my PanCan article:
My first blood work showed a CA19-9 of 2500. One week later, the day of my first Chemo, it was up to 3500. Four weeks later it was up to 10,000. After the fourth round of chemo, it started down. Plotting the numbers coming down forms the most beautiful graph I’ve ever seen. After ELEVEN MONTHS of chemo, My CA19-9 went below 35, into the normal range. My CA19-9 has been below the normal number of 35 for about 1.5 years. My last chemo, it was 5.2. It’s been below 10 for several months.
As a benefit of the Clinical Trial, I get a CT Scan and MRI after every four rounds of Chemo (plus free parking). After the first 4 chemo rounds, my scans showed my tumors had shrunk by about 30%. After about 6 months, my lung tumors had disappeared. My fatty tissue tumors were no longer mentioned. After a year, my tumors in my liver and pancreas which were initially about 2 inches appeared to be only scar tissue. I have never had a scan of either type that was worse than the previous one. Luckily, ONLY GOOD NEWS has ever been on my scans.
Regretfully, a lot of patients cannot tolerate Folfirinox. LUCKILY I have tolerated it well. I don’t know if it’s me, the slightly reduced amount used in the clinical trial or the combination of Folfirinox plus the CPI613. Regardless, chemo has not affected me really bad. I have remained active. I feel that I’m active for a Normal 70 year old. I KNOW I’m active for a 70 year old that was diagnosed with Stage Four Pancreatic Cancer 30 months ago.
My doctor daughter and her family live about 14 hours away. My wife and I drive there about 4 times per year. Many times we have left the Thursday chemo in our camper and driven half the way there, camped in a Pilot Station parking lot and finished the drive the next day.
My daughter has made sure that the grandkids get to know their grandpa. We have gone on probably 8 week long trips with them. Besides that initial trip to Disney, we have made a trip to Key West and a major camping trip to Yellow Stone last summer. We have also gone to Destin Florida and a week-long camping trip two years ago in Asheville NC. There have been multiple family trips to Wilmington NC where my son lives. In fact, we are all going to Cancun for a week within the next month.
An important point I’m trying to make is: I feel good 12 of the 14 days. I feel about like I have the flu for the two days of chemo. I know that I feel GREAT for a Stage Four PC patient 30 months after diagnosis. I have never puked from chemo. I have had a few rounds of diarrhea that are controllable with just a little extra medicine. I just finished my 56th round of chemo last week and got my 15th set of scans this week.
Digressing, I retired from Real Estate in July of 2015. We had bought a Class B camper (small motor home) a few months earlier. In August of 2015 we headed out to Red Wood City CA (San Francisco) to visit our other daughter. I remember thinking while driving to Red Wood City “for a 67 year old man, I feel pretty good”. Little did I Know what was before me. We spent a week in Red Wood City before heading to a big art festival in the desert north of Reno NV. On the way to Reno, my power steering pump broke. I drove that beastly camper to Reno, back to Red Wood City and back home to North Carolina with NO POWER STEERING. After driving the camper about 4000 miles with no power steering, it was no surprise for me to think that I had a herniated belly button. BTW, we had a great time at the week-long Art Festival, called Burningman. But two weeks later I got the HORRIBLE DIAGNOSIS of Stage Four Pancreatic Cancer. Very soon after the diagnosis, my wife hugged me, looked me in the eyes and said very seriously: “WE WILL GO BACK TO BURNINGMAN NEXT YEAR”. I remember thinking to myself, I love you but you know I have stage four pancreatic cancer, Fat Chance of that happening. WELL, she was right, we did go back the next year, 2016. AND, we went back THE NEXT YEAR, 2017 also. And last week, my wife bought tickets for us to go back this year, 2018. The trip out and back is about 5500 miles. I normally drive about 500 miles per day. We camp with a group at Burningman called ROOTPILE. Rootpile provides Blue Grass Music to the folks at Burningman. My wife and I have formed a lot of friendships with the other Rootpile campers. In fact, the last two years, she planned all the breakfasts, she bought the supplies and we (with some help) cooked breakfast every morning for close to 100 Rootpile friends. I cooked 20 lbs of bacon or 20 lbs of sausage each morning for 8 days in a row. Plus, we cooked hundreds of eggs, hundreds of biscuits, gallons of gravy, gallons of grits, etc.
Some Trial History: According to online reports 61% of the 18 clinical trial patients had a complete response or a partial response to the trial drugs. Early in the clinical trial, 4 participants had a “complete response” to the chemo. The doctors will not use the word “remission”, nor will they say “cured”. But, complete response means that these 4 patients had no sign of the disease. Their scans were normal and CA19-9 was normal for months. SO, one by one, the four went off of chemo. Well, after varying periods of time, one by one, their cancer came back and they had to go back on chemo. One of them died 32 months after being initially told to go home and get her affairs in order. One developed Alzheimer’s and was taken off chemo. One, I never met. One, a new friend of mine, stayed off chemo for 20 months with no sign of pancreatic cancer. After 20 months his CA19-9 started creeping up. An MRI showed that he developed a new small tumor in his liver. So, he went back on folfirinox plus the CPI613. He tells me that he is responding well and his tumor was shrunk after his second new scan. His CA19-9 is back in the LOW normal range. He works full time as a building contractor except for his two days of chemo. IN JUNE, he will be a FOUR YEAR SURVIVOR of stage four Pancreatic Cancer: WITH NO OPERATION!!! I’m positive he will make it. He is healthy as a horse, strong as an ox, stubborn as a bull and can leap over tall stacks of Bud Light cases in a single bound. AND, in good weather he sometimes rides his Harley about 100 miles to chemo.
As I said earlier, Luckily, I was one of the last patients to join the clinical trial. After the four patients that came off chemo had to all go back onto chemo, my doctors decided to see what will happen if I don’t come off chemo. I will stay on it as long as my body will allow it. SO FAR, after 56 rounds of chemo, my blood tests show no real issues. I feel OK. I HAVE NO IDEA WHAT THE FUTURE WILL BRING. BUT, as I’ve already said, I’m heading to Cancun with my family VERY SOON.
LUCKILY, one of my Rootpile friends lives in Cancun in the winter and spring and I just may let him introduce this 70 year old man, and my wife that is exactly one week older, to SCUBA DIVING.
LUCKILY for new stage four patients, I heard an oncologist say recently that there is supposed to be a MAJOR worldwide phase II clinical randomized trial of this drug combination. The phase II study is supposed to start about August 2018 in about 20 hospitals in the USA. He said that they may be looking for up to 600 USA participants in this trial. Ask your oncologist about it.
MY ADVICE: If you are diagnosed with this awful disease and get any chance to be involved in any clinical trial, TAKE IT! In fact, seek out clinical trials. A clinical trial may save your life
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