cobraearl
03-31-2018, 09:35 AM
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.
https://www.pancan.org/stories/survivors/clinical-trial-participant-encourages-patients-actively-seek-clinical-trials/
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.
https://www.pancan.org/stories/survivors/survivor-advocates-second-opinion/?utm_source=newsletter&utm_medium=email&utm_campaign=progress+matters&utm_term=all+constituents&utm_content=zz
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.
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.
https://www.pancan.org/stories/survivors/clinical-trial-participant-encourages-patients-actively-seek-clinical-trials/
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.
https://www.pancan.org/stories/survivors/survivor-advocates-second-opinion/?utm_source=newsletter&utm_medium=email&utm_campaign=progress+matters&utm_term=all+constituents&utm_content=zz
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.