Towards the end of November, Patti and I had a serendipitous moment: within a day of each other, two people who Patti and I know but do not know each other recommended that we check out the Burzynski clinic in Houston.   It’s website gave the details of some of its successes, as well as some sporadic details of the personalized treatment plans it recommends to its patients.

We were encouraged and made an appointment. Their motto is: “First, do not harm”.   We sent them my test results and CT scan results from the testing I had done at MD Anderson. We had to pay $500 for them to look at my pathology reports. We traveled down from Dallas for a two-hour appointment on December 14th. And, we had to pay $1,000 up front for the appointment before seeing a doc.

Unfortunately,  Dr. Burzynski was not in the day of our appointment. We met with a team of people: the office’s head of medicine, a doctor who would have been in charge of my care, a doctor from Johns Hopkins who appeared to be the top aide to Dr. Burzynski and the office’s financial director.

The two-hour meeting proceeded to four hours. They discussed my results and mentioned that they would need to take a blood test and send my liver biopsy samples to a lab in Phoenix for detailed examination. Their theory, that they claim is approved by the FDA, is wrapped around providing extremely personalized treatment that is directly tied to my DNA. So, for example, if the blood test shows that I have a cancer marker in my system that normally shows up in prostate, colon or stomach cancer, then they would use the treatment for prostate, colon or stomach cancer to address my pancreatic cancer.  So far it’s making sense and our hopes are rising.

The long and short of it is that they would use a treatment that has been successful treating other cancers if their markers show up in my pancreatic cancer. That’s the very short of it, and I may not be describing this as easily as they could.

Then, we met with the financial director, who described the payment processes, and, again, we saw the strong evidence of cancer being a business. To be a patient here, we would have to use the Burzynski labs and pharmacy. A blood test and biopsy test was $4,500 — and may or may not be reimburseable from insurance. There is one pill they suggested I start taking that would have been $4,500 a month for the rest of my life!   They would charge $15,000 for the treatment plan, and routine care after the treatment plan was recommended could run as much as $35,000 a month. Please sign this contract and by the way, there are some unknown factors, but nothing to worry about. Also, if we called to talk with a doc during my treatment, we would pay a rate of $160 for each 10 minutes  for consulting with the docs.  Hopes are crashing like waves on the rocks.  We felt like someone had kicked us in the stomach.  Here’s an alternative treatment, but, we are unsure of the costs, and if you get in the middle of it, and can’t finish paying, sorry!  Patti was getting a bit unsettled.  It was almost like saying, “If you love your husband enough, you will find a way to pay for this.”

I asked about insurance and they mentioned that some may be covered by insurance and some may not, but we would have to sign a contract to find out.

We tallied it up that out-of-pocket costs would run around $150,000 a year for treatment. And, more than likely the treatment plan would be based on chemotherapy, which all of the other four oncologists we have met with have also recommended. And their chemo is reimburseable from insurance.

Needless to say, while the meeting held great promise, there were some aspects of the meeting that left Patti and me a little flim-flammed. We talked about it on the drive back to Dallas and by the time we had reached the house, decided it was not a good fit for us. We have never liked heavy-handed sales tactics; like them even less when they are trying to sell you your health.  Loved the idea, hated the presentation and the way it would be handled… there has got to be a better way!