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.

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