(This post is a work in progress, but I wanted to post it to get the info out there.)
I have stage 4 unresectable pancreas ductal adenocarcinoma. In September 2018 when I was diagnosed, my life expectancy was 3 to 6 months with treatment. This site is about my long term survival, 3 years and counting. I will cover the research I have done, how it impacted my treatment choices, and what has changed over time. I’ll include some personal stories, and struggles. I’ll also cover my methodology and advice on how others facing similar circumstances can take control of their own treatment.
Full disclosure, I am NOT a medical professional. Any suggestions I give should be discussed with qualified medical professionals. When ever possible I will provide links to the relevant medical research, so you and your doctors can have the facts, to facilitate productive conversations.
A bit about me, I diagnose and solve problems in complex systems for a living. I have been running an IT business focused on that skill set for more than 20 years. So when I was told my body wasn’t working right, I dove in to solve the problem(s). Using the same process I have developed to diagnose and fix novel problems in complex IT configurations, I set out to find the best solutions to provide me with the best life possible.
Below is my process:
Step 1 – gather info, what is wrong and how is it affecting other parts of the system (my body).
- I had blood clots causing pore blood flow to some of my organs.
- I was losing weight do to malabsorption, caused by my pancreas not producing the digestive enzymes my digestive track needs to function properly.
- My liver wasn’t functioning properly. My liver numbers were elevated, indicating damage to my liver.
Step 2 – identify points of potential catastrophic failure. What is likely to kill me?
- Bood clots in bad places. Like many metastatic cancers, blood clots, in the lungs and brain are possibly.
- Insufficient fuel and nutrients. Pancreatic cancer is often a wasting disease, marked by extreme weight loss and fatigue.
- Liver failure, this is another common cause of death with pancreatic cancer.
- Kidney failure, like many chemotherapy treatments, treatment for pancreatic cancer can damage your kidneys.
- Sepsis, an internal infection that can cause severe organ damage, it is also a common cause of death in pancreatic cancer patients.
- Uncontrolled diabetes, like many with pancreatic cancer, I had started to show signs of diabetes.
Step 3 – Identify steps and treatments to mitigate symptoms and all possible catastrophic failures.
- Blood clots – start taking a blood thiner, in my case Eliquis link to study
- Insufficient Fuel and Nutrients – start taking digestive enzymes. This is a big key to surviving pancreatic cancer, because one of your main challenges is staying healthy enough to continue treatment. When I was first diagnosed I had to take in large amounts of food and digestive enzymes in order to just maintain my weight. Link to study
- Liver Failure – limit intake of compounds know to cause damage to the liver, also if appropriate get radiation to control and/or limit liver damage from tumor growth.
- Kidney Failure – drink plenty of the right kind of liquids. Get saline infusions when liquid intake is difficult.
- Sepsis – practice good hygiene, pay attention to signs of mild infections, take Doxycycline
- Uncontrolled Diabetes – this is a tough one as maintaining weight in my opinion is more important than controlling high blood sugar and its long term effects. I take metformin and glimiprid and monitor my blood sugar. I also eat plenty of protein and high fat foods, but I do eat large quantities of complex carbohydrates. Most problems from moderately high blood sugar are long term problems, not being able to continue treatment is a short term problem. When/If I drive the cancer into remission I’ll worry about the long term health issues.
Step 4 – identify appropriate treatment options to arrest disease progression, rate by effectiveness, side effects, and risk.
- Folfirinox
- Gemzar
- Folfiri
- Radiation
- Xeloda
- Radiation with Xeloda
- Other drugs with anti cancer records.
Step 5 – read up on long term survivors with similar diagnosis, go back to step 3 and repeat.
