Smooth Sailing

I just want to say thank you to those who have donated and continue to donate. It has been such a big blessing to have that financial support while managing this treatment. I just finished getting my first blood test drawn which will be sent to a lab in California. It may take a couple weeks before I hear back on that. I will also be getting a CT scan which may reveal even more than the blood test does. I'm taking it day by day and I've had a string of great days in November and now on into December. This has allowed me to get some work done and go on some dates so I have been able to keep my mind off things. Your donations have played a key part in this temporary relief so even if the treatment does not work, know that my quality of life has been great these past few months. Merry Christmas to every one. Love Drew

Drew's Divas at the Turkey Triathlon

11 girls calling themselves Drew's Divas competed in the Turkey Triathlon on November 7, 2009. For most of them, it was their first triathlon. Along the way they gathered sponsors and raised money to benefit my cancer treatment. I am grateful to them for the efforts they made and continue to make, and for the inspiring dedication they showed toward training and competing. I mostly thank them for becoming my close friends. My love and thanks goes out to each of them. Many thanks to those who supported and sponsored this event. I have felt love and support from all of you as well. Here is a sample of the days events.

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.

A bit anti-climatic

Two days before my surgery was supposed to take place, my doctor decided to do some scans. He found that despite my feeling worse in the tumor area, it actually has not grown at all. In fact it has not grown ever since scan one in August of last year. Also my entire Vena Cava down to my legs is full of blood clot so it won't do any good to replace a part of it. He says my kidneys are draining well and my circulation is okay. Although it feels like there is a baseball in my chest, I guess I'm done with doctors and hospitals for a while. So as Perecles said to the Athenians....."maybe your not so bad off having a dormant tumor on your vena cava".

Awaiting Surgery

The latest in treatment for colon cancer....very small, highly trained, kids seek and destroy anything suspicious.

My surgery has been delayed for a bit while I meet with some doctors about the procedure. They want to preform some tests on me before they operate. My doctor has called in some additional help from a thoracic surgeon and he wants to meet with me and do some scans. In the meantime there is a doctor in Germany who is meeting with some investors from San Fran Cisco to raise some money to pay for my post surgical treatment there. The doctor in Germany also said that he met a patient who wanted treatment for a tumor inside his inferior vena cava, same as me, and this German doctor told him to have it surgically removed first and then his treatment would clean up the remaining cancer cells. The patient did not have it cut out and it broke apart and went into his heart and killed him. Long story short, he told me I am doing exactly the right thing. Some friends of my parents are in Germany right now getting treatment for liver cancer from this doctor. They are giving a play by play of the treatment. It seems to have good results. Thanks for everyone's prayers and thoughts. I love you all and I can't wait to party in Kauai when it's all over.

Tumor Removal

I met with a new doctor who told me that chemo is not a solution for the kind of cancer I have. He said with sarcomas you have to cut them out. I told him that no one wanted to do the surgery because it was so complex and it wouldn't help my mobility issues because I would lose my vena cava and a kidney. He recommended an end all surgeon.
I met with the surgeon today. To my amazement he thought he could remove my tumor, patch my vena cava (with a crygenically frozen one from a cadaver), and save my kidney by attaching it to a lower point down in my gut somewhere. All the things that the doctors at Huntsman said were impossible. In fact on my way to the appointment Huntsman called and said they would like to try radiation to see if they could shrink the tumor before surgery. I asked this doctor about it and he said we used to do that 20 years ago. That's a disproven method. Huntsman is not where you should be. He said we've done more complex surgeries here than Huntsman ever dreamed of. I begin a new series of tests at St. Marks.

Drews News

I'm done with conventional cancer therapy and I'm back to enjoying life. My doctors have told me there's nothing else they can do and that I should go enjoy the next two years of my life. I am currently seeking alternative treatments and practicing some self healing techniques. I am waiting to hear back from a doctor in Germany who recently cured a young girl with the same cancer and is looking to do more clinical trials. I have a cocktail of supplements that I am taking and I have been able to do a little hiking and walking each morning. I was recently prescribed a new blood thinner and the first thing my doctor said was that it is exactly the sam thing as rat poison. I am enjoying my free time now and am working on three screenplays and editing a short film. I have become a fan of BYU volleyball and look forward to attending the NCAA volleyball tournament at BYU. Thankyou to everyone for all your support and prayers. I will continue to get scanned every three months to monitor any tumor growth.

A step backwards

Update-

My doctor is telling me that no surgeon will operate on me because it is too complicated. She is recommending that I do radiation to get rid of the nodes on my lungs. I really need the big tumor taken out and some kind of bypass to restore my circulation. I will be meeting with a surgeon soon to get his take on it....and the beat goes on...

Graduation Day

This week I stayed in a condo in downtown Salt Lake while I finished my 8th round. I drove myself each morning to the infusion clinic, then hung out with friends and went to see a few movies. I remember saying to my mom after round 1 that I didn't think I could do it again. It has definitely gotten easier and easier especially since I moved to an outpatient schedule on round 5.

Today at the infusion clinic all the nurses sang a graduation song and gave me a diploma. I told them that since I didn't have my video camera that day, they would have to do it again.

Now my doctor is working to have me take part in a clinical trial. As long as I am eligible and it doesn't make me too sick, it should be even easier to manage. This will put off my surgery a few months which means I'll be on blood thinners for a while longer. I may also start meeting with a specialist to try and figure out exactly what my surgical outcome possibilities are. If they can't restore the circulation to my legs then there's no reason to push for moving up surgery.

I went into the doctors office determined to tell them that I wouldn't be doing any more rounds of chemo and that I wanted to get surgery. 30 minutes later I came out having agreed to do two more rounds. So what did they show me. While the large tumor in my Vena Cava has not changed in size, there is some shrinkage in the six lung nodules. There is some belief that if the lung nodules get small enough, they can be removed with surgery as well, but since these have been determined inoperable at thier current size, they need to be treated with chemo. The large one can be removed although new evidence suggests they may have to remove my right kidney as well (my favorite one, I really like that little guy).

Also they said if I were to take a 6 month break for surgery and recovery right now, I could build an immunity to the chemo treatments that seem to be working somewhat. If the lung tumors were to then come back with a vengeance, I would be as they say in the business, "screwed". I'm not sure I agree with their assessment however. It feels to me as if I'm building an immunity to the drugs as I take them consecutively. I am taking the nastiest part of the chemo at home. I seriously considered secretly not taking it and then seeing if my tumors size goes way down. My philosophy is that dead tumors shrink because macrophages eat the dead cells away. Since macrophages are a product of your immune system, it stand to reason that a healthy immune system could shrink a dead tumor. Then I would tell them as they pat them selves on the back that I didn't even take the pills. But if I'm wrong then I've just wasted six weeks.

I am currently half way through the 7nth round now and it's going pretty well so I guess I'll just suck it up and hope they are right. Raise your hand if any of this makes sense.