My Father’s story…..

I just wanted to write my father’s story for everyone.

Early December 2011 my mother noticed while they were playing cards how yellow my father was and told him that he needed to get that checked. He made an appointment with the doctor, when he got there he told the doctor his symptoms and the Drs response was that there was an 80% chance he had pancreatic cancer and that more tests need to be performed. They sent him for a CT and some other tests. When they came back, the Dr said it was not pancreatic cancer, however there seemed to be a narrowing in the bile duct and that he would have to go to the hospital for a ERCP and EUS to take a look the next week.

After his tests, the results came back, it was cholangiocarcinoma, the doctor did not think it was resectable based on what she saw but she was willing to schedule a surgical consult at the U of Minnesota (we are lucky enough to live by both the U of M and Mayo).

The surgeon agreed to try surgery and it was scheduled for 12/22, when they opened him up it was clear that it was indeed not resectable. He wasn’t a candidate for Mayo’s liver transplant either since the tumor was so big (about 3 inches long, kind of narrow and following the bile duct up to the liver but no liver spots seen). We had him take a photo of the ugly thing. Not the Christmas present we wanted.

He started chemotherapy with a combination of gemcitabine and cisplatin as a palliative therapy. The oncologist gave him 6 to 18 months. Everything we read said that he had no chance, unresectable tumors have a 0% five year survival rate so I went on a mission to look for a miracle. I dove in feet first, reading open trails, clinical trail reports, medication studies, got access to a university database and ran through that as well (I’m an analyst so doing research sifting through large amounts of data is what I do). I came across a drug called Sodium Dichloroacetate (DCA), Universities have been studying it, it has open trails but isn’t available in the US. We went to the dca site, found a guy named Bill who has survived since 2005, after he had a whipple and it came back. I googled Bill to make sure that he did in fact exist and was a real guy, and he was. We talked to him on the phone, his advice was to start DCA right away, don’t wait until the 4th round of chemo when your body is destroyed to do this as a last ditch effort. After that conversation, my dad ordered DCA from a website.

He started using DCA as soon as he got it, 10 mg per kg with caffeine and b1 daily, 5 days on, two days off (chemo day and day after). The oncologist isn’t aware of this, he didn’t even want my father to take vitamins because they may interact with chemo. Harold has not had any reaction to the DCA, the chemo I can’t say the same, he has fevers and nausea from it right after as well as low blood counts.

Fast forward 3 months:
My father went in for a CT scan, when the results came back and showed significant tumor shrinkage. The doctor was amazed at the results and highly encouraged. I personally feel it’s a combination of the DCA and chemo. We’ll let the oncologist in on our little secret in a bit after a couple more scan results.

I’m not recommending people to do what we have, but it seems to be working for us right now, I’ll let you know in a couple months what the next test shows (hoping it keeps going in the right direction). We were also looking at metformin since it has open trails as well but more for pancreatic cancers however it shows to help reduce metastasis of cancer which would help in addition to the DCA and Chemo. (still trying to find a dr to off label that one for us)

MIT has put in a patent for a cisplatin/DCA treatment called MITAPLATIN.