Houston...we have a problem

Hello to everyone that peeks in on this blog. Thank you for all your prayers, they are starting to manifest in small and great miracles. I have returned home from Houston to try and continue my treatments from Provo. I had a great time meeting the staff and working with the team down there. My ex-stripper nurse was especially entertaining and I want to give a shout-out to her for all her help. My job is to figure out how to try and continue the same treatment here in Utah. I sat down with a doctor to ask him if he would be willing to write prescriptions and administer the IV portion of my treatment. (It is illegal for my doctor in Houston to write prescriptions to be filled out-of-state). I was rejected on the grounds that it was unethical to deliver a drug designed to fight colon cancer to a patient who has sarcoma cancer. The only way he would do it was if he could find some data to show that it could be effective. I called my doctor in Houston to relay the problem. He said he would begin searching for said data but I was skeptical since no one has the type of cancer I have. I ran into two more dead-ends in the following three days. Then I got a call from doctor number one, who said his assistant did find some evidence to suggest that the drug could yield effective with my cancer. He even set up an appointment for the next day to have it infused into me. Then he said that his other assistant found a way to get the drug directly from the manufacturer entirely for free. So that's one expensive drug down and three to go. The second most expensive drug is made by the same company. That company called me today to verify some things so I know they are working on it.

A special thanks to Drew's Divas who are working hard to be tri-athletes. Thanks to all of you who have contributed to help this treatment move along. Thanks very much to my boss and my buddies at work who have allowed me to keep working and help pay for this as well.

Doc B on Larry King

If anyone is interested, Stanislaw R. Burzynski, my doctor, will be on Larry King Live Thursday Oct. 15th. He will be on there with Ted Kennedy's doctor, Johnny Chochran's doctor, and Farrah Faucet's Doctor. You can't miss him, he's the one with the hypnotically-big nose...(which I'm told is where he keeps all his secrets).

I am on a medication that requires 6 pills, 4 times a day. It's designed to help you get rid of the ammonia levels in your blood. Too much ammonia in your blood is toxic and attacks the nervous system. Ammonia also makes you sleepy. Today I start an infusion that is supposed to attack the gene responsible for building blood vessels to feed tumors.
For a list of media clips, click here. Here's a blog from another patient I found.

Sam Houston Smile On Your Brother

How should I put this....my tumors are growing and the cancer is spreading. I have resorted to Houston, Tx. home of the Burzynski Cancer Clinic. Burzynski discovered in the seventies that pregnant women are missing certain peptides in their blood and urine. These peptides would tell the body to destroy the baby. He reasoned that cancer victims would also be without these peptides because their bodies were not destroying their tumors. He became famous for this breakthrough, despite being thrown in jail by the FDA. His patients and supporters rallied around him and raised money to free him. My dad followed this story and even contributed money to his cause.

Today he is pioneering what is called targeted gene therapy. As I understand it he prescribes drugs according to the genetic activity level in your cells. There are 4 known genes that tend to be overactive during cancer growth. His aim is to target the ones that are overactive and shut it down at a DNA level. He found two on me that his treatment could target.

I'm taking four drugs. Two are pills and two are given as infusion. The infusions are twice a month and last 90 minutes. Once they are done with me here in Houston, then I continue with a doctor in Utah, if I can find one willing to do it. The drugs are outrageously expensive. They are FDA approved but not for my type of cancer so they are being used "off label". One drug is 18 grand alone and I have to have it twice a month. The solution is to apply for free drugs from the company directly. If I can't get that, then I apply for a pill version of the drug which doesn't work as fast as the infusion does and is less expensive. I should qualify for free or discounted drugs since I work for myself and don't have insurance. The drugs are non-toxic and the side effects are promised to be minimal.

I started pill 1 today and I start pill 2 tomorrow. Next week I'll have two infusion and then I should be cleared to go home and continue from there. If all goes well I'll keep on this medication for a couple months and then receive a checkup scan to monitor progress. If it is working I will continue indefinitely until the cancer is gone. They have never treated anyone with my type of cancer but their therapy is not focused on the type of cancer you have but rather the type of gene activity you have.