cobraearl
10-13-2016, 11:10 PM
Well, it been 54 weeks since my doctor gave me the news….
You have Stage Four Pancreatic Cancer. (pancreas, liver, lungs and fatty tissues)
I’ve published a couple of updates.
http://thefactoryfiveforum.com/showthread.php?19145-CobraEarl-Retiring-Due-to-Health-(Pancreatic-Cancer)&highlight=pancreatic
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 ****tless!!!!!
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 on. 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 "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. Ive 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 im 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 **** out of me, cause I knew what Pancreatic cancer has always meant!!!!!!!!!!!!!
THANK GOD!
THANKs TO 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
You have Stage Four Pancreatic Cancer. (pancreas, liver, lungs and fatty tissues)
I’ve published a couple of updates.
http://thefactoryfiveforum.com/showthread.php?19145-CobraEarl-Retiring-Due-to-Health-(Pancreatic-Cancer)&highlight=pancreatic
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 ****tless!!!!!
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 on. 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 "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. Ive 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 im 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 **** out of me, cause I knew what Pancreatic cancer has always meant!!!!!!!!!!!!!
THANK GOD!
THANKs TO 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