My name is Andy Seynaeve and I live in the beautiful Quad Cities area (Western IL with a scenic view of Iowa) with my wife, 3 kids, and 3 dogs. In March 2019, I received devastating news. I had a routine cardiologist visit that identified I was slightly jaundiced and was sent to the ER. I was diagnosed with stage 4 pancreatic cancer with Mets to my lungs. Having lost my mother to this disease 10 years prior, I knew that I wasn’t in for a fun time.

Remarkably, my body had a positive response to treatments, and within 2 years, my oncologist could not detect any active cancer. After going off chemo, however, the cancer came back in about 9 months.

Restarting treatments, the disease once again was suppressed fairly quickly. We decided to not stop chemo and went onto a maintenance routine.

Eventually, the maintenance chemo lost effect. We switched from 5FU-based chemo and tried Gemzar and Abraxane. The first round was okay; I experienced some minor edema in my hands. The 2nd round... I was hospitalized for 3 weeks. Kidneys shut down, severe edema, I couldn’t walk due to swelling in my feet and legs.

We stopped Abraxane and tried again a couple of weeks later. I had almost the exact same reaction without the kidney shutdown. Then, another 2 weeks in the hospital.

Next, we tried oxaliplatin and Capecitabine. I didn’t even finish treatment when I started getting violently ill. Blood tests were done. The oxaliplatin was causing my antibodies to attack my platelets, dropping them to the point where I was going to need a transfusion. Fortunately, my platelet count bounced back right at the point where I was going to be transferred to a different facility. I still ended up with 2 weeks of quality time in the hospital.

Many second opinions were obtained between Mayo Clinic and Memorial Sloan Kettering. No insights were provided.

Over time, we’ve paid out over $250,000 in expenses, co-pays, deductibles, etc. This is with my various insurances paying out approximately $3,000,000. 20+ CT scans, several MRIs, 12 ERCP procedures, 148 rounds of chemo. It’s been a journey.

I continually search for trials, completed for results, in-progress for attempting to join, etc. During that process, I found a phase 2 trial just completed by the University of Iowa for high-dose vitamin C infusion, basically doubling survival rate/length with improved quality of life.

Unfortunately, between the government shutdown (no new trials) and RFK Jr. stopping funding for MCG cancer research by NIH, there is no light on when or if there will be further trials, even with these positive results.

Since the current trial is over, and no phase 3 trial is scheduled/funded, neither my insurance nor hospital will support me trying vitamin C infusion. I have been able to locate a couple of private infusion providers that will follow protocols identified in the trial, but the infusion cycles are approximately $10,000 each (most likely need 2).

We are currently back to lower dose Gemzar and pre-treating the chemo with several days of steroids to mitigate the effects of edema. So far, so good. No results are yet available.

We (my family) are hoping to raise most, if not all, of this cost. Anything over goal will go to a pancreatic cancer org like Let’s Win PC or Pancan.