Lets Win PC is another Pancreatic Cancer Advocacy Group that published my story. Click on this link for the article: https://letswinpc.org/my-treatment/2018/05/22/stage-iv-clinical-trial-pancreatic-cancer/
First PanCan Article Sept. 23 2018
In September of 2018, PanCan the Pancreatic Cancer Advocacy group published my first national article. Click on this link to read the article:
Clinical Trial Participant Encourages Patients to Actively Seek Clinical Trials
Post Seven: September 30, 2019
TODAY, September 30, 2019 is my Four Year Aniversary of being diagnosed with Stage 4 Pancreatic Cancer. Would not be anything to celebrate EXCEPT, IM STILL ALIVE!!!!!!!!!!!!!!!!! And, quite frankly doing pretty good for a 71 year old OLD MAN willing to do about anything to hang out with a group of SUPER NURSES every two weeks.
TOMORROW, I start my 93rd round of Chemo. That’s Folfirinox plus the experimental Drug CPI613. The doctors tell me to keep doing it as long as I can stand to do it. (GOOGLE CPI613) (GOOGLE Rafael Pharmaceuticals)
LAST Friday I had My 24th MRI and 25th CT Scan. No results yet but the last 3 years these scans have been CLEAR.
IT’S BEEN FOUR GREAT YEARS…….
Nothing changes your attitude like being told BASICALLY, you gonna die and pretty soon.
As many of you have read, I was in a PHASE One study of our drug combination. 20 of us at only one hospital. 4 or 5 lived about 3 years. (UNHEARD OF). One of us is still alive after 5 years and 3 months. AND IM STILL ALIVE. 4 and 5 years on chemo alone is ABSOLUTELY UNHEARD OF….
THE GREAT NEWS!!!!! Our drug combo is now in a PHASE THREE study. Many hospitals WORLD WIDE…. Hopefully, sometime in 2020, it will get approved by the FDA.
IF YOU KNOW of anyone needing info on pancreatic cancer give them my special email address: PCearlgroce@gmail.com.
By the way, in those 4 years, I’ve gotten to watch my 3 grandkids get 4 years older.
Had a 50th wedding anniversary last Christmas
Went to Disney World Twice,
Burning Man 3 times,
Toronto a dozen times,
We have put 70,000 Miles on our Class B Camper,
Bought a small Condo at Carolina Beach last fall,
My Son Got Married at 45, back in June (I stood as his Best Man)
AND HIS WIFE is PREGNANT with my Second Grand Son… (this one will have my last name…)
It has been Four Great Years. I Hope for 30 more and Hope to see THOUSANDS of Pancreatic Cancer Patients have the same Great Life after diagnosis that I’ve had. Hopefully, two years from now Stage 4 Pancreatic Cancer will not be considered a Death Sentence.
People tell me to have a good day…. I TELL THEM: “EVERY DAY IS A GOOD DAY”!!!!!!!!!!!
Post Six: April 2019
Hi this is Earl Groce aka Cobraearl, 44 month survivor of Stage Four Pancreatic Cancer. I was last published by PanCan in January of 2018 and Lets Win PC in ????? 2018. This is an update to my story.
Life continues to be GOOD!!!!!! I still get chemo every two weeks. Right now, Im in my 81th round of Folfirinox PLUS the experimental drug CPI613. I still 100% credit CPI613 for saving my life. My Wife and I still visit our grandkids in Canada multiple times each year. I always drive the 735 miles each way. I continue to work around the house and yard. My wife and I bought a SMALL condo at Carolina Beach back in October of last year. We are still decorating the condo. We visit the beach across the street often.
December 28, 2018 Juanita and I celebrated our 50th wedding anniversary with about 70 of our family and friends. My new stage four Pancreatic Cancer friend David Wingo, who will celebrate 5 years in June 2019, since being given two weeks to two month to live celebrated with us. David was patient #5 in the 20 patient phase I dosing study. I was patient #18.
Last August Juanita and I made it to our FOURTH Burning Man festival. Burning Man has been important to us because we had just returned from our first Burning Man a couple of weeks before I got my AWFUL diagnosis… Stage Four Pancreatic Cancer also in my lungs and liver. Juanita told me then that we would go back. I seriously doubted I would return but WE DID, Three Times…
LIFE IS GOOD. About 2 days during chemo every other week, I feel about like I have the flu but I CAN LIVE WITH THAT. I’m still convinced that CPI613 helps me and other phase I study patients that I met tolerate the Folfirinox.
Post Five: September 28, 2017
TWO YEARS AGO September 30 2015, I got my diagnosis of STAGE 4 PANCREATIC CANCER.
Well, I’m STILL ALIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!
I AM DEBATABLY THE LUCKIEST PANCREATIC CANCER PATIENT EVER.!!!!!!!!!
I’m in reasonable good condition for someone who got a probable death sentence two years ago. I take the chemo every two weeks. Feel like I have the flu for about 4 days, which is about nothing compared to what I hear other chemo patients enduring. Just completed round 45 last week.
Im still in the drug study for CPI 613. CPI has had great results for several of the 20 people in the study. My Friend (patient #5) was taken off chemo 1.5 years ago thinking he was cured. After 1.5 years his cancer has come back and he is back on chemo. BUT, his diagnosing doctor gave him 2 weeks to 2 months THREE YEARS AGO!!!.
My friend Virginia had the “whipple” operation. During the operation the surgeon realized she was in much worse shape than they thought. After she became conscious, the doctors told her to get her affairs in order. A few days later, she was offered a slot in our CPI study. Approximately 18 months later, she also was taken off chemo because they thought she was cured. About 12 months later it came back. She went back on chemo but after a few months later it quit working. After about 6 months she had a stroke and passed away. Her husband said she had 32 great months after being told to get her affairs in order.
After all 4 of the patients that were taken off chemo relapped, the doctors have all advised me to stay on chemo as long as my body will tolerate it. My buddy patient #5 received 32 rounds before coming off. As I’ve said, I’ve received 45 rounds. Two weeks ago, I asked my doctor (picking at him) “how do we know I’m not cured?” He replied, “we don’t know you are not, but we don’t know that you are”.
After every 4 rounds, I get a CT and MRI. They have been clear for many months.
About every cancer has a cancer antigen number that is accepted as normal…… Like 4 and below for your PSA number. OUR NUMBER is called the CA19-9. Normal is 35 or below. I presented with 2500 the first time it was taken two years ago. A week later, the day of my first chemo it was up to 3500. Four weeks later it was up to 10,000. Then it started down!!!!!!! By Christmas it was significantly lower. A graph of the numbers is the MOST BEAUTIFUL GRAPH I EVER SAW!!!!!!!! Approximately August 20 of 2016, my number went BELOW 35 as in NORMAL. The number has been below normal for over 13 months. It’s been in the 8-10 range for about 3 months.
During all this, our family has gotten closer. July this year, we all went on a 10 day trip to yellow stone park. I drove my 1997 Dodge conversation van towing a 22’ camper from NC to Salt Lake City, picked the rest of the family and headed to yellow Stone. I drove about 8000 miles. Purty good for a sick old man. August/September, this year, Juanita and I headed out to Burning Man for our third Burning Man trip. Another 5000 plus miles. This time we headed out in our 1998 Class B Ford Econoline Van. We go visit the grandkids in Toronto 4 or 5 times per year. They come here 2 -3 times. We have spent a week with them in the Keys, Desdin Fla, Wilmington, NC and other visits to numerous to remember. It’s been a whirlwind TWO YEARS.
Of course I have no idea what the future will bring.
BUT LET ME SAY ONE THING!!!!! If you find yourself diagnosed with an “uncurable cancer” get yourself in a drug study. Even if you don’t get cured, you will receive a much higher level of care. And have a positive attitude!!!!! Guess that is two things.
Fourth Post, March 31, 2018
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
Too read about the experimental Pancreatic Cancer drug I’m on send an email to:
Third Post, October 14, 2016
Well, it has been 54 weeks since my doctor gave me the news….
You have Stage Four Pancreatic Cancer. (pancreas, liver, lungs and fatty tissues)
My body chose a great time to get pancreatic cancer.
The good new IS……… I’m doing GREAT.
The Drug trial I’m on seems to be working for me. When I first was diagnosed, my cancer marker number was about 2500. After about 6 weeks, It was up to about 10,000. I get a new number every time I go in for chemo. (every two weeks) Since 11/10/15 my number has fallen in a perfect graph to 19, last week. Previously 23, 21, and 39 in early august before going to burning Man. Burning man does a body good. (drove almost 6000 miles, at 500 miles per day)
A marker number of 35 and below is considered normal….. BUT, you got to have a CLEAR MRI and CT scan to make the doctors happy.) Even if the doctors are not 100% satisfied YET, I’m tickled shittless!!!!!
I feel good. Not as good as before. I have some numbness and tingling in my fingers and feet… Neuropathy. I have never been nauseous from the chemo. Went home from first chemo with 4 anti nausea meds and one diarrhea med. Still have 99% of the nausea meds. The Diarrhea meds, well I’m on my second 90 day prescription. one MAJOR BOUT in Cheyanne WYO…… Let it suffice to say that it was great to have been in a camper van with a toilet VERY HANDY….. cause I did a very childish thing….
I walked a mile the other day. Feel less than great for 3-5 days after chemo. But it don’t keep me from driving half the way to Toronto, and the second half the next day. Surprised all the grand kids when we showed up for Nicholas’s 8 year old birthday supper a couple of weeks ago… .
My Wife, Juanita, has been great. Very supportive. I recently told her she may have to put up with me for 10 – 15 years.
The drug study had 20 people in the initial “dosing study”. My doctor tells me that 12 of us never responded to the drug. They are now deceased. I got into the study late. Four of the early participants got to the point that they had zero signs of pancreatic cancer. One has been off chemo for a year with no recurrence. Two have had some signs of recurrence and are back on some chemo. Don’t know about the fourth one. That leaves four of us that are responding well. I get my next MRI on Oct 26. HOPEFULLY, my tumors will show to be further shrunk. SO FAR, Ive never had an MRI or CT Scan that was worse than the previous one. all have been better or no noticeable change….. HOWEVER, My tumors in my lungs have been gone for months.. and, the only tumors mentioned are the liver and pancreas…. AND, I’m happy to say that my belly button is soft and pliable (Normal). look up Sister Mary Joseph Nodule…. the crazy walnut thing in my belly button that got me to the doctor in the first place, thinking I had a herniated belly button….. NOT!!!
Recently I told my daughter (the surgical oncologist) that I read that the typical person who dies of pancreatic cancer has had it 10 – 15 years before diagnosis. I asked her IF mine gets down to where it might have been10 years ago, and it comes back, does that mean I have 10-15 years. Her answer was a Frustrated. I DON’T KNOW!!!! YOU ARE OFFICALLY A MEDICAL MYSTERY. No one has ever been where you are, so there is no historical data. I will take being a live “MEDICAL MYSTERY”!!!!!…
This has brought our family closer. In the last 12.5 months we have been to Canada to see the grand kids about 4 times, we went to Disney World, Key West, Ashville, NC, Wilmington NC as a whole family. AND 4 of us made a return trip to BURNING MAN. (grand kids and their parents did not go on that trip. I know I’ve put almost 20,000 miles on our Class B Ford Camper Van THIS YEAR, we named it the named the “VAMPER”.
Looking back on it, my doctor daughter thought I might be gone by Christmas last year. She told Juanita that first week that we would have to sell our two story hose because “Dad wont be able to climb those steps.” WELL, this week, I went up on the roof of our little rent house in Wilmington and repaired shingle damage from Matthew.!!!!! Ran a chainsaw also cleaning up limbs that were blown down. Painted a bedroom also. DAMN, I WAS TIRED, but what the heck, IM ON BARROWED TIME. I remember having a discussion with her last year at new years in Canada….. I told her how long the average patient on Folfurinox (my standard chemo) lives, 11 months… AND she said, you are no longer in that average pool of patients because your marker number has already fallen THREE TIMES!!! THAT WAS COMFORTING TO HEAR!!!
IF you find yourself in a similar situation, find the best hospital. Find the best oncologist. Find a drug study if at all possible. I’ve had a LOT of people praying for me. I’ve had wonderful family support. AND, keep a positive attitude: EVEN THO it can be very hard to.
BTW, last summer, a very close friend of mine died of cancer in his liver, spine and a couple other places…. Died in 2 weeks, 3 days from initial diagnosis….. he never even knew what base type cancer he had…. Heck of a great guy. We went to school together from the 7th grade. Affected me mentally. Why do some folks do so bad and others have totally unexpected results the other way…
The drug study has been successful enough that I’m told they are going to expand the initial study….
There is so much I want to say, but IM GLAD TO BE ALIVE!!!!!. because 54 weeks ago, my doctor scared the holy crap out of me, cause I knew what Pancreatic cancer has always meant!!!!!!!!!!!!!
THANKS FOR ALL THE PRAYERS!
THANKS FOR THE CHEMO!
THANKS FOR THE DRUG TRIAL!
THANKS TO MY ONCOLOGIST!
THANKS TO THE NORTH CAROLINA BAPIST HOSPITAL!
THANKS TO THE CHEMO NURSING STAFF!
AND THANKS to my doctor daughter and my whole family
Second post, Apr 26, 2016
THINGS CONTINUE TO BE PROMISING!!!!!!!!!!!!!!!!!!!!!!!!
My Cancer marker Numbers to date.
“Perfect” is below 32.
Our drug study Group of 20 pancreatic cancer patients now has THREE patients off chemo due to having no sign of PC. The three got to ring the bell in our cancer ward signifying that their chemo regiment IS OVER!!!!!!!!!!!!!! We have a fourth patient almost ready!!! The significance of this IS: Stage 4 Pancreatic Cancer patients have traditionally taken chemo until they die.
I hope to be number 5, 6 or 7. 😄😄😄😄😄😄
Hope, HOPE to be off chemo by BURNINGMAN 2016. One of the 4 had their results after 48 weeks.
My main pancreas Tumor is shrunk to 3.8 cm from 5.8 cm in October. Main liver tumor at 3.1 from 5.4. 😄😜😄
As I originally said, I picked a good time to have pancreatic cancer.
Having a reasonable quality of life… Continue to see the grand kids every 3 – 4 weeks.
First Post, October 2015
I will start in the Middle..
Tue sept 29 I went to the doctor thinking I had an “incarcerated belly button hernia”. My son had a hernia in his belly button, My brother had one and it was operated on and repaired…
Digressing, I had driven my Class B camper from San Francisco to burning man, back to San Francisco and then HOME with no power steering. 1998 Ford 350 Super Duty Diesel Class B. LONG and HARD DRIVE… It broke on the way from San Francisco to Burning Man.. So is ASSUMED I had further ruptured my belly button from driving that BEAST 4000 miles with no power steering…..
My Doctor Looked at it and said it needed fixed in the next couple of days and sent me for a Cat Scan of the general area the same day. (I suspect he suspected something else)
Got the Cat Scan same day and the operator told me I needed to drop back by my doctors office the next AM…. I suspected a RAT….
To make it simple, he told me my hernia was actually a “Sister Mary Joseph Nodule” and my cat scan showed I have tumors in my pancreas and liver and smaller tumors in my lungs and fatty tissues.. Google: “Sister Mary Joseph Nodule”…. EVEYONE SHOULD KNOW WHAT THIS IS: For their health sake and the health of their loved ones…. NOT SOMETHING YOU WANT TO HAVE.. And I had never even heard of it…
My doctor had me go Wednesday and have the Nodule Biopsied… CONFIRMATION…
My Oldest daughter is a Surgical Oncologist in Canada. She deals with Pancreatic Cancer and Liver Cancer all the time… I had my doctor call her from our meeting to explain the situation… I sure could not talk to her…. can hardly type this.. She has 3 partners and she packed up and flew to North Carolina that afternoon. We picked her up at the airport… Cried, hugged, hugged and cried…. and drove to the small hospital in Salisbury NC that had the initial catscan.. got a CD of it for my Daughter to look at. (Coincidentially, that hospital is the one I was born at back in 1947)
Next morning we got the biopsy results… But she was already searching for the best doctors at the best hospitals in our area… The doctor she picked said they had an opening Oct 13, today.. she got them to move it up to oct 6. My doctor is Angelia Allistar at Wake Forrest Medical Center at the NC Baptist Hospital… She has a trial going on that is having excellent results.. The trial is all the best drugs all the hospitals are using plus one more… Last Tuesday, I had another Cat Scan, an MRI and blood work.. Wednesday I had a PORT installed (sort of like a permanent IV)
I will have chemo every other Tuesday. FIRST one was today… LONG DAY…….. I wear a pump that injects one of the drugs for 48 hours. get that pump off Thursday…..
Out of 13 people that have been in the trial, one is in “total” remission and two more appear to be heading that way…
We have a local news anchor, Margaret Johnson with WXII that had Pancreatic Cancer 10 years ago.. she is alive and well and doing the news…
PANCREATIC CANCER is not a death sentence…. Not something you OR I want, but its not a death sentence… Prayers Are Needed..
I DIGRESS AGAIN, My doctor Daughter was supposed to have a 25th highschool reunion last weekend.. She bought tickets for her family of 5 to come in last Wednesday and stay through yesterday… THE REUNION GOT CANCELED for lack of interest… She was considering us all driving down to Disney World since the reunion was canceled…
………………………… WE DECIDED TO GO ANY HOW!!!!!!!!!! …………………
So Wednesday. about 4 hours after my outpatient surgery to install my port, Gramma Juanita and I and The 5 Canadians Headed out from the Charlotte Air Port and drove to Jacksonville FLA.. (I Rode, they drove) Thursday, I felt good enough to drive the van on down to Universal Studios.. We ALL rested by the pool on Friday, Went To Disney World on Saturday.. Got up leisurely on Sunday and Drove up to Amelia Island Fl. BEAUTIFUL Island. Finished up the trip by dropping the 5 Canadians off at the airport yesterday (Monday) at 5:00pm.
Im glad we went to Disney and Universal. Sort of kept my mind off it and gave me some QUALITY TIME with my three AMAZING grand Children…
Got my first chemo today and I don’t feel BAD.. not great but NOT BAD…. and that brings me up to right now.. I will reread this and edit it a bit… But two weeks from Initial Diagnosis to First CHEMO may be a record… And I credit my Doctor Daughter for Riding Herd, expediting or what ever term is appropriate…
I MAY BE ON THIS FORUM 10 Years from now…. BUT I WILL NOT BE IN THE COBRAPARTS Business much longer… I have a lot of loose ends I need to tie up, IE get my affairs in order JUST IN CASE it don’t go good for the home team… If I tell some one I have two months to 3 years, my daughter fusses about both ends…. But Margaret Johnson has lived 10 years and some SUPER DRUGS Came out only 5 years ago… WHO KNOWS, I might make my life long goal of being shot by a jealous husband when Im 99. My wife and family have been super suportive thru the last two weeks….
I do want to say some things about my cobra friends:Since 2000 I have MET some of the nicest folks IN PERSON thru my FFR2362, MANY I’m lucky to call personal friends… I have met many super guys on the 3 sequential Ffcobra forums, plus the Factory Five official forum.. Ive been doing cobraearl (part time) for 12 or 13 years and I have NEVER had one person shit me out of a dime… YOU GUYS ARE THE BEST… and I still look at that cobra and say…. I Actually built that….
Sort of like I look at my THREE SUPER KIDS…. and say to myself, I sired those .. and Im pretty sure I did: And I had a big influence on them as one of their parents. And I look at those three amazing grand children and wonder what they will grow up to be… I could talk about them for pages……. PROUD GRANDPA is an Understatement!!! Proud Father is an understatement.. Proud Husband is an Understatement…
Jeff Collins of Whitby Motor Cars and I (CobraEarl) RENTED a race track about 8 years ago and held an open track event.. did not make any money, but we DID break Even….. WHO WOULD HAVE EVER THOUGHT I WOULD HAVE RENTED A RACETRACK FOR AN ENTIRE WEEKEND…. AND WE HAD A BALL…
September 30, 2015
My doctor says I think you have stage 4 Pancreatic Cancer. The CT scan we did last night shows a tumor in your pancreas, liver and smaller mets in your lungs and fatty tissues. I have you scheduled two days from not for a biopsy to know for sure what kind of cancer you have. It was Pancreatic Cancer.
And the Journey Begins.
Most of my story is told through a series of posts to a Factory Five Racing Cobra Forum I’ve been a member of since 1999. There are also stories posted by the PANCAN pancreatic cancer action group. And information posted by LET’SWINPC another pancreatic cancer action group.