I was working out of town, so I drove myself and called my wife who was 1.5 hours away.  I had been in pain for 3 days, not being able to sleep, lay down, sit up or stand up without being in pain.  For me to even think about going to an ER meant the pain was bad.  The ER doctor examined me and ordered blood work and a CT scan.  My mind started racing thinking about all of the potential bad results I could get back from the testing.  Gall Bladder surgery, spleen, ulcer or hernia problems all were scary possibilities in my mind.  In the meantime, I was given morphine for the pain and I at least received some relief.  My wife arrived at the ER around 1:00 am.

At 3:00 am the doctor came into the ER room and told us that the CT scan showed tumors on the pancreas and liver and believed that I had Stage 4 pancreatic cancer and could have as little as 6 months to live.  Both my wife and I were shocked and could not believe the diagnosis or prognosis.  He recommended that I go see an oncologist later that day.  He had already had an oncologist look at the CT scan results prior to sharing the diagnosis with us.  This diagnosis was worse than anybody could imagine just for going to the ER with abdominal pains.  We could not believe the doctor told us that I may only have 6 months to live.  We drove back to where I lived after picking up pain medications at the 24-hour pharmacy.  From that time on our lives changed.

Over the next several weeks I had punch liver biopsies, PET scans, more blood work, visits to oncologists and surgeons.  The path forward after all of those visits, tests and scans was determined to be surgery, The Whipple Procedure to remove the 5 or 6 tumors identified in the original CT Scan.  The holidays (Thanksgiving and Christmas) were very emotional and my family and friends helped us get through them.  It always seems like you get the news at the worst possible time.  The fact is whenever you get the news about cancer it becomes the worst possible time.

After the holidays we had to decide how to proceed.  We made the decision to get a second opinion at MD Anderson Cancer Center (MDA) in Houston, Texas.  We started driving to Houston without an appointment while emailing doctors to determine which one would see me.  After a series of emails to a particular specialist a friend had recommended, he sent back an email indicating he did not treat my particular type of cancer and gave me a name of a specialist that would treat my cancer.  I emailed him and was given additional email addresses to send all of my test results from the other oncologists and surgeons.  I was put on a waiting list and would be called when an appointment was available.  We were able to stay at my parents’ house while waiting for the appointment.  After 5 days MDA called at 9:00 am and asked me if I could be at MDA for tests and scans at 1:00 pm that day.  I indicated I would gladly accept the appointment.  They also scheduled the follow-up appointment with the oncologist/specialist the next day.  One of the best practices at MDA is you get the results of your scans and tests the very next day.  That is great for me since I do not have any patience.

The next day the oncologist/specialist went over the results and stated that I had inoperable stage IV pancreatic neuroendocrine cancer.  He also showed me on the scans that I had 18 tumors in contrast to the 5 or 6 that had been identified previously.  I asked why there would be a difference between the two scans, and he indicated that for different types of cancer there are specific scan protocols that are used.  The first scan was done without knowing I had any cancer and should have been redone after the diagnosis.  The second opinion was that I could not have surgery due to the number of tumors and they had a new treatment that had just been approved by the FDA on December 16, 2014.  The scan showed 1 primary tumor on the pancreas, 2 tumors on lymph nodes and 15 tumors on my liver.  After the appointment with the oncologist/specialist at MDA we decided to start the newly approved treatment and not get the surgery done.

I asked my oncologist back in the Carolinas if they would work with MDA and they seemed reluctant and somewhat upset that I received a second opinion.  After getting back to South Carolina I searched for a new oncologist that was willing to work with MDA and be a part of my cancer treatment team.  I found a great new oncologist who was willing to work with MDA and become an important part of my team.  It is important to have a local oncologist because the appointments at MDA are 3 to 6 months apart depending on your treatment and cancer progression.

The new treatment that was approved was Lanreotide injections.  For the next three years, I was given injections by my local oncologist in my buttocks every 28 days.  The injections were given with a huge dull needle, much like a harpoon.  My nurse enjoyed giving me a tough time about the injections since I told her she could put that she was “a pain in the butt” on her resume.  The injections stopped the spread of cancer and the tumors did not grow very much for almost 4 years.  The original success of the treatment indicated that the treatment would only be effective for 12 to 18 months.  During that time, I was also taking Creon to help my digestive system and other drugs to help with occasional pain and other symptoms.  I returned to MDA every 6 months for the first 2 years for scans and every 3 months once cancer started growing again.

After 4 years the Lanreotide stopped being effective and I was switched to a daily chemo pill, Affinitor.  Both oncologists agreed on the path forward.  The daily chemo pill cost over $15,000 for a 28-day supply.  Insurance in South Carolina does not cover much of the $15,000 so I had to apply for the Patient Assistance Program with the drug manufacturer, Novartis.  After 45 days they accepted me, and I was able to start the treatment.

Chemo pills in South Carolina and some other states are not covered by insurance the same way that chemo in a bag or IV is covered.  Chemo is a bag/IV is covered almost entirely while chemo pills are not.

For the last 16 months, I have been on chemo pills and the cancer is not growing significantly.  The only measured change has been my tumor marker Chromogranin A (CGA) has fluctuated between high and super high.  Typical CGA values depending on the method used to measure the bloodwork are less than 85 to 160.  My CGA levels have stayed around 1000 with spikes as high as 2244.  My CGA is checked every month and my team indicates the CGA levels are used to determine when scans should be performed.  I am currently getting scans at MDA every 3 months.  My tumors are not changing significantly, and I will continue on this treatment until significant changes are observed.

Recently I was tested to determine if the next treatment that is being considered will work.  The next treatment that is being considered is Peptide Receptor Radionuclide Therapy (PRRT).  The test showed I was a candidate for the treatment.

Overall my cancer journey has been good.  From the beginning prognosis of 6 months to live to today which is over 5 years I have gone through highs and lows.  Just like everybody I have scanxiety, depression, worries, and other lows.  But during the last 5 years, I have really enjoyed life and tried to be the best person I can be.  I have grown as a Christian, father, son, and person.  I have helped other people dealing with cancer and I hope this website provides help to many others.  I want to thank all of the people that I have supported me and helped me grow.