CancerGuide: Inspirational Patient Stories
"I have been blessed. I feel like I have found my way. I thank God for all I have been given at the end of every day. I have been blessed."
I will try to make my point but I like to tell stories so I will just try to get clear up front. If you or a loved one is fighting cancer you need to go in with your eyes wide open. Doctors are really smart people. But they are just people. They should not be put in the exalted position that our society has put them in. They don't know everything. They are just men and women. They are highly trained technicians. Most mean well. Some are just trying to get paid.
You need to educate yourself. You need to be involved in your own healing. If you just sit back and let the hospitals and doctors take over and do whatever they think best then don't be surprised if the results are far less than you expected.
Get a second opinion. I know you have heard this before. It is true. Two heads really are better than one. Get your head in the equation as well. The Internet is a great source. Obviously, "buyer beware". There are a multitude of books out there. Do some research.
This became obvious to me when my initial oncologist wanted to try the same old therapies on me that had so far not worked for anyone else in my condition. In my business we were forced to figure out how to put drilling rigs to work in conditions they were never designed for. When the customer asked us to do this we put a bunch of engineers on the task and tried to figure out a way. Can do. This is an attitude that was not readily apparent at my first hospital and oncologist. Don't keep doing the same things over and over again expecting or hoping for different results.
I had a certain disease. Brain stem Glioblastoma Multiforme (Grade 4 to boot). They had a list of approved therapies to treat me. That was that.
Engineers and doctors are a lot alike. Both are very intelligent. Both do great things. Build bridges, cure diseases. Very analytical. Great. But after working with engineers for nearly 20 years it is easy to see that they are just people like you and me. They don't know every thing. They are not smarter than everyone else. Smart. Just not smarter than everyone else. This obviously applies to doctors as well. Smart. Sometimes brilliant. Not smarter than everyone else.
Okay, enough said on that. I hope you get my point. You must do your homework. You need to be informed. Do not leave this fight only up to your physician. He or she are only human. Say a prayer, educate yourself, and trust your intuition.
God bless you.
It was maybe mid-April 99. I was in Vietnam negotiating a difficult contract. The symptom was not really evident but it was there. The skin on my forehead was slightly numb. I put it off to too much jogging and the sun in Vung Tau. It just wasn't that annoying. A few days later a good friend of mine was jogging next to me at the club in Jakarta and thought I may have had a mild stroke. What he saw was my left eye opening wider than my right eye. I put it off to my lazy right eye. Anyway, we would be in Singapore soon and I would get a full check up. I had been noticing numbness in my feet after a hard workout on a Stairmaster. Also, my left hand would get a little tingling after jogging for a while. I would see a cardiologist in Singapore in May. I would just schedule the appointment right after our region meeting. No worries.
On top of all the minor worries or symptoms I just didn't feel at the top of my game. My jogging was getting harder. Not easier. I thought I might even have some exotic Asian bug. Something was just not right.
Just before our meeting in May I made a trip to Myanmar (Burma) as we had no presence there and there was a job prospect to check out. Before dinner with the client I needed to take a nap. Dinner was difficult as the client was French, the meal was duck, and of course there was wine and cheese. Indigestion. Apparently another symptom of my condition. Another symptom I just managed to blow off.
The dinner was not difficult because the client was French. The meal was duck because the client was French. The problem was indigestion.
Back to Jakarta. Prepare for Singapore. Then off to the meeting. Five days of meetings helping the region management plan for up coming jobs and possible contracts. It was a good meeting. I exercised every day. My wife (girl friend at the time) joined me. Jennie worked for an airline (Cathay Pacific) at the time. Jennie was able to make her schedule flexible. I traveled all over the Far East. Including Hong Kong. So even though Jennie lived in Hong Kong at the time and I in Jakarta we were both able to manage our schedules enough so that we were together at least 2 to 3 weekends per month. I was trying hard to convince her to marry me. She just didn't like my job. She didn't like the schedule I kept. That was all about to change.
I had worked nearly 20 years for the oil well drilling division of Schlumberger. I was the marketing manager for the region in the Far East. We had 17 offshore rigs in the region. Our area stretched from Bangladesh to Japan and Sakhalin Island including Indonesia and Australasia. Big area. Lot's of flying. The best 2 years so far of my nearly 20 years. I was enjoying myself. The operations secretary at our office in Singapore (Julie) had helped to organize the meeting and had scheduled me with the doctor I wanted to see. The doctor was an American cardiologist living in Singapore. The hospital was Mt. Elizabeth. At the end of the region meeting I had things I wanted to do relating to what I had learned from the meeting. I nearly cancelled the appointment with the doctor. Jennie convinced me to go see him. We were a little late. It was about 2 in the afternoon. The cardiologist checked me out. I explained the symptoms. He said my heart was as strong as a bull's and thought I may have carpal tunnel syndrome. If anything. Therefore, he would like me to go see a neurospecialist in the same building. He called the doctor and the doctor fit me in straight away.
In the meeting with the neurospecialist he said that before we could have an intelligent conversation he needed me to do an MRI. This was a bit over the top, he explained, but he would just like to be sure of what he was talking about. So, he called the MRI center in the same building and made me an appointment straight away. Their efficiency was starting to worry me a little. Even by Singapore standards things were moving really fast.
Half way through the MRI the technician came in and said that the radiologist had seen something and wanted to give me an injection to try and highlight it. Fear and loathing. She injected me with the isotope and continued the MRI. We finished up about 5pm and went back to the cardiologist. He explained that the MRI was a little extra but they just wanted to be clear. I should come back in the morning about 9am to visit with the neurospecialist.
That night we went to dinner and went to the night safari. They have this zoo where you walk in a tropical forest among the animals. Kind of cool to be just across a canal from a Bengal tiger. I was worried. Did not feel very good about things. MRI's just mess you up.
The next day we went to see the Singaporean neurospecialist. I don't wait long and almost go straight into the man's office. My scan is there on his vue box. It seems there is this huge white dot in the middle of the scan. Things are not right. I sit down. The doctor tells me straight away that we have found the problem. You have a tumor on your brain stem. Very abrupt and to the point. He tells me there is nothing they can do for me in Singapore and that I needed to go back to the USA. He noted that Houston, Texas was a good place to be going. They may be able to help there. The cardiologist wanted to see me before I left so go see him. Okay. Good luck. Good bye. I had paid for the session the day before. This day they didn't need any money.
I walked into the hallway and told Jennie that I was dying. She was shocked. Held my hand. We went to see the cardiologist. He tried to make me feel better. Told me that there were all kinds of radiosurgery techniques now. Go home now. Good luck. Good bye. He also did not need to get paid that day.
Back to the hotel. Mandarin Oriental. Sat down and cried with Jennie. Called my boss. Mike. Also my friend. He was shopping with his wife. Was short at first. Then I told him I had just been diagnosed with a brain tumor. He came over immediately. Arranged for Jennie and I to go back to Houston immediately. First class. This was Friday, May 21 1999. I turned 40 April 19, 1999. I had just hit the stride in my career. I wanted to get married to Jennie. I never imagined I would want to give my heart so completely to a woman. Things were going well for a change. I had just been run over by a freight train. This was surreal. How could this be happening?
The next day Jennie and I were off to the airport. Jennie for Hong Kong. Me for Jakarta. I had double vision on the way to the airport. This thing was coming sooner rather than later. Time was obviously running out. I dropped Jennie off at the Cathay terminal then I was off to Jakarta. Both of us to pack up our lives. I had not lived in the US for nearly 20 years. Jennie never. Fear and loathing.
Back in Jakarta I went to the office and started to get the stuff I did not want left behind. I knew I wasn't coming back. I even searched the Internet in all the usual sites for my condition. Things didn't look good. It seemed the consistent prognosis was 44 to 72 weeks from diagnosis for a malignant tumor in the brain stem. Then death. We still didn't know if this thing in me was malignant. There wasn't much hope that it wasn't apparently. Hoping for a miracle.
Back at my apartment. I called Walter and Dan. Two good friends I worked with. Gave them the news. Planned on dinner that night at my place with Mike, Dan, and Walter.
Bought some steaks. A baguette. Made a salad. Cooked some French cassoulet and foie gras I had been saving. Had some wine. Played some poker. Said good bye to my friends. Mike slept on the couch. Mike had walked his dying father up the stairs to his bed for the last time as he had died of cancer. He knew a little about what I was going through. He was trying to help. Compassion came naturally. He had an idea of what I was going through.
Walter came over the next day to help me pack. He brought his dog. Sam. Sam is a cool dog. We got to know each other in Africa. Sam is just a street dog. An African Basenji mix. Walter and I were posted in Nigeria together. Walter is a huge man. He could hardly keep from crying. Huge man. Huge heart.
Walter, the maid, and myself packed up that day. Pretty good job. We got everything. I was ready to leave it all. Without Walter and the Indonesian maid (Santi) this would never have been accomplished. The next day I was off to the USA via Hong Kong to pick up Jennie.
I called my younger brother and sister and let them know. This ruined their day in more ways than were immediately obvious. As you will see later.
Mike had called people we both knew that were in the right positions to help in Schlumberger Houston. When we arrived there was a car to pick us up and take us to an apartment rented for me by the company. Not bad. A softer landing. As you will see throughout this story my company and the insurance company they fund really did right by me. I was surprised. I expected much less. I am a bit cynical. It is still hard for me to believe all the things they did for me. Schlumberger took care of me.
It is hard for me to speak of my brother and sister at all. There were things that happened that don't need mention here. However, they were both there at my arrival.
We (me, brother, sister, and Jennie) all moved in together in this 2 bedroom apartment rented for me by the company. I thought this may be good, as I did not know how much help Jennie would need never having lived in the US. I did not know how disabled I would be or how soon.
From Jakarta I had sent my US based physician an e-mail explaining my problem and asking for his help getting me in front of the appropriate doctor to help me. I had an appointment the day after I arrived the US. This neurosurgeon had a good reputation and wasted no time in telling me he could do nothing for me and telling me that I needed to be at M.D. Anderson cancer hospital. He knew the head of the neurosurgery department there and would help me get an appointment. He didn't take any money either.
M.D. Anderson needed me to pay for the first meeting in advance. Before they would even book an appointment. However, they didn't want the money from me they wanted it from my insurance company. Of course they wanted to be connected to the deep pockets. Luckily my insurance company moved quickly and we were ready to go in a day or so. This is a company funded insurance plan for employees administered by a firm out of Brussels, Belgium (European Benefits). So we were dealing with a time difference. This did not matter once we made that first connection.
At the meeting with the head of the neurosurgery department at M.D.Anderson he recommended a biopsy to determine exactly what type of tumor we were dealing with. It just may be benign, very slow growing, something else. All very unlikely but we needed to know what we were up against. The two choices for biopsy were 1) a needle through the top of the brain down to the brain stem to extract some of the tumor, or 2) place me on my side, cut open the left side of my head, drain out my brain fluid, let the brain sag down so that the brain stem is visible, then remove what tumor can be removed and go from there. The surgeon recommended option 2. We chose option 2. At least get something done while you are in there.
Before all this got going Jennie and I needed to get married. We got married in a little Hispanic wedding chapel on a Saturday. Then we applied civilly on Monday. You have to wait 2 days in Texas. We also needed a will.
So by about the 2nd of June I was on the operating table. The surgery took about 7 hours. The tumor was inoperable but they removed an outcropping to the left of my brain stem. The surgeon told my wife while I was in recovery that the biopsy would take about 2 or 3 days to analyze but he felt it was a glioblastoma grade 3. Judging by what he could see and by my symptoms. He also felt this tumor was slow growing, as it seemed to have been there for a while. Anyway, the surgeon broke it down for Jennie: tumor could be benign or grade 1 but it did not look like it so we would not hope for that, grade 2 would mean a slow growing tumor and I could probably live up to 5 years, grade 3 would mean I may have as much as 2 years, and a grade 4 would mean less than a year. The end would come quick. He thought that due to my symptoms I could very possibly have a grade 3 tumor. We would know in a few days.
It took me 2 days to get out of the hospital. We went back for the biopsy result. I guess there is just no good way of giving bad news. We had already waited a while to get into the examining room. Once there our doctor kept walking by our examining room never looking in. Finally the surgeon arrives. Grade 4. Next step is for you to be turned over to an oncologist who would quarterback the rest of my treatment. The prognosis has been explained to your wife. However, you are 40, strong, so you never know. Sorry. Good bye.
After surgery Jennie had to fly back to Hong Kong. Quit her job. Pack up her life. Close down every thing. Get out of her lease. Round trip in 4 days. I was on pins and needles. Immigration and all. That's all we needed. Some pinhead in immigration "just doing his/her job".
I had been searching frantically on the web for some alternative. Diet, supplements, another type of therapy. Nothing seemed very promising. I ran across BURZYNSKI and antineoplastons but my brother being from Houston told me of all his troubles. How he probably did not even practice any more. Forget about it. It was just a scam. Some woman in my brothers' office was telling my brother to be sure and get proof of any success claimed by BURZYNSKI before I spent any good money there. Okay. Seems hopeless. I also did not ask MDA for proof of any success before I went there. As if that means anything.
At MDA they lined me up with a psychiatrist. I guess she was there to assist me along my final path. I remember that she was an atheist. Some spiritual help she was. I guess I was deserving of this. I had led a fairly secular life over the last 25 years. Attending this meeting with the psychiatrist and me were Jennie, my brother, and sister. Anyway, this meeting quickly deteriorated into a meeting all about my sisters' anger and her problems. The psychiatrist did tell me in front of my sister that this was my time and that I may need to make some decisions about who should be included. For this clarity I am grateful.
Anyway, the psychiatrists' assistance for my final journey was not welcome. I had other plans.
BETRAYAL and CLARITY
In addition to what we had been going through my CPA called to say that no tenant had paid rent for the month of June. I have a small business of investment properties. Very small. What was the deal? Let's not jump to any conclusions. Let's call my sister to see what was going on. My sister had gone AWOL. It turns out she had gone to all of my tenants (about 75% occupied apartments at the time) the morning of my surgery and had the tenants write their checks that month to her so she could get me cash in the hospital. I didn't get any cash and I never saw her after that. She also had the other 25% of my apartments rented out in her name. Telling me they were empty while I was overseas. Now that I was back she (they) became desperate. My brother had done everything he could to defend her. There was something not correct here either but we needed my brother's help and so we didn't dig any further. Things just "smelled" wrong. My brother was obviously involved in the scheme. I just could not concentrate on this now. The freight trains just kept coming.
I found another way. One night after screwing up some crab cakes I just collapsed. I couldn't take dying this way. I did not want to die. Things were just getting good. I was in love. I wanted to live. I went to our bedroom and got on my knees and started praying to God. I had not prayed in 25 years. I begged the Lord to guide me. Give me peace. Heal me. I needed a miracle.
I started searching and praying for a miracle. It seemed nothing could help me. Less than 1% chance of survival is what I was faced with. This was no option. I prayed constantly for guidance, wisdom, and knowledge. The Lord started to work in my life. In small ways. Things. Intuitively I just knew it. How to get over that less than 1% hurdle?
I felt things were happening in my life, which was the work of the Holy Spirit. Jennie, my friends, my company, insurance, no financial worries really as the company was backing us. I just had this intuition that I wanted to go to BURZYNSKI. Jennie felt that way too. It was strong and consistent. Against all advice from the people around us that were "advising" us.
I had been trying to figure out a way to end it all and still keep my insurance in tact for Jennie. When I told Jennie she just held my hand and asked me to try. To pray. To stay and be with her. I got a new fight in me. I was going to die trying.
About this same time a friend of mine flew over from the UK to see me. Another came from Colorado. They encouraged me. Said they were praying for me. We went to church together. Michel and Tommy have been incredible support for me. Tommy and Michel prayed for me together in a cathedral in the UK. Tommy went to Lourdes in France and got Holy water from there for me.
I don't know about Holy water but I do believe in the power of prayer and support. A person's touch. I remember when Michel just grabbed my head and me and cursed my tumor and told it to get out of his friends' head. These things mean a lot to someone terminally ill. It meant a lot to me.
My friends really supported me. I was a little blushed at how people from all over the world came to my aid and support. People from all different faiths, beliefs, and walks of life. We are all indeed human. For this I am forever grateful. I have been blessed.
When can we get the radiation started? You need to wait 2 weeks. I don't think we have 2 weeks. Move your asses! It took about 2 weeks before I started my 20, 40, or 60 rads. I forgot. It was a low dose due to the location of my tumor. Did not want to get too rough. I might die. Go figure.
I was pushing to start radiation. Finally I got an appointment to be fitted for the radiation machine. I thought we were ready to go. I went for my appointment that was so difficult to get only to find my radiation oncologist was not there. He was on vacation. His assistant baby doctor was there to help me fill out all the disclaimers. If I died doing this treatment they were not accountable. Etc., etc.. Great. Cover your ass. Been there done that. Can we hit the microwave now? I told this young doctor to get the lead out, that I was sitting here behind the 8 ball and he wants me to wait for this prima donna to get back from his vacation while I've got the "alien" growing in my head.
Apparently a GBM doubles in size every 2 weeks. Nice. This joker is on vacation and I've got the "alien" ready to pop out of my head. "Will some one get Sigourney Weaver here for me?" So, we get measured that day. I think it was a Thursday. We started our 6 weeks of treatment the next Monday.
Each Monday you were supposed to go visit your radiation oncologist to see how things were going. Well the first Monday he was on vacation so we went to visit him the second Monday. The follow up is "conveniently" scheduled the same day as your radiation session. Just 6 hours later. So you can come back downtown and spend another 3 hours messing around at MDA. So we show up at 1pm for our appointment. We had already been there at 7am. Maybe this doctor has something positive to say. Well about 3pm we get invited in to the examining room. Another 15 minutes or so this arrogant little vacationer comes in and spends about 5 minutes with me. I ask him if he knows anything about BURZYNSKI. He does. He is very condescending but does claim to know that BURZYNSKI's treatment does have some efficacy. Very negative. Anyway, that was it. I never went back for another Monday waste of time. I even encouraged other patients to boycott this stupid waste of time. We are sheep. I think there was one that followed my small rebellion.
Knowing what I know now I would not have wasted my time on this old, outdated, and antiquated treatment. A waste of time in my opinion. The hospitals are still just trying to get those big machines paid for. Again.
I was on the web every day and night. I prayed constantly with Jennie. We went to mass every day. Repeated the prayer to St. Jude every day several times a day. There must be something. There are a lot of people out there ready to take your money. That is for sure. The only thing besides supplements and nutrition that held some promise in my opinion was BURZYNSKI.
I was on a very strict detox diet. I was doing coffee enemas. I was taking 20,000 mg of vitamin C every day. IP6. Bovine tracheal cartilage. CoQ10. All therapeutic doses. I drank my own urine for 6 weeks. I was taking a whole list of brain-related supplements, and herbal remedies.
There are supposed to be some brain specific herbs. Not everything crosses the blood brain barrier. One needs to do homework and as they say "exercise caution". You could die. And then?
I went to healing touch where the practitioner tries to align your energy flow so that your body can heal itself. We even went to visit a shaman. Probably the most suspect of anything I did. The point is you need to do everything you can. Don't just wait on the doctors. Because in my opinion they just don't know for terminal cases.
If you do the research you will see what I mean.
I only took supplements that apparently crossed the blood brain barrier. Go to Amazon.com and you can search for all kinds of books on fighting cancer. Fighting cancer is an individual journey. We all have our own path. I was also meditating and doing affirmations every day several times a day. There are several books by O. Carl Simonton on meditation. John Kehoe has some good thoughts on affirmations. Affirmations attracted me the most. The belief that your subconscious mind can heal. Train your subconscious mind to do any thing you want. Use that brain power to heal. Seemed that nothing else would work.
The web is a great tool. Beware. There are a lot of folks out there just trying to separate you and your money. They don't care if you are sick or not.
Just before the end of radiation Jennie and I went to interview with Dr. BURZYNSKI. We both had our censors on full. I am strongly inclined to base decisions on intuition. When I can I try to marry both intuition and analytical analysis. Too much of one or the other and you won't make the right decision. I looked Dr. BURZYNSKI in the eye and asked him about my case. He told me precisely the type of chemotherapy MDA would offer me (MDA had yet to recommend a chemo-poison yet but when they did BURZYNSKI was right). BURZYNSKI had analyzed my blood work, and reviewed my chart to date. He told me that antineoplastons had only a 30% chance of interacting with my tumor. If it did interact with my tumor there was a 50% chance that antineoplastons could stop the tumor. Let's see: even if he was exaggerating a little any number over 1 is already a huge increase in my current odds. Okay. Let's roll.
This was all wonderful news. However, my doctors, my brother, the radiation oncologist friend of my best friend from High School and University (who is a doctor in Birmingham), had told me that Dr. BURZYNSKI was a charlatan! Who was right?
Jennie and I were praying. We also had been given no hope at MDA. No hope anywhere. Nutrition, supplements, meditation, affirmation, on and on. No hope. Blood brain barrier. No way. You are dead. Get with the program. Nah, nah, nah.
Okay we decided to give BURZYNSKI a shot. It would just be 6 weeks. If the antineoplastons did not work then we would be released. Another dead-end.
We went for a follow up appointment with our oncologist at MDA. The radiation had reduced my tumor by 20%. The chemo offered was as BURZYNSKI had predicted. Just a couple of weeks before that there was a 3 page e-mail of options from my oncologist. No trials however. I did not fit any criteria.
So we were going to try again what had so far not worked in any condition similar to mine. Great. What is that about expecting different results by doing the same things over again? Anyway, we told this doctor that we were thinking of going to BURZYNSKI. He responded that this would not hurt his feelings. His tone was a little condescending. Whatever.
We were off to BURZYNSKI. BURZYNSKI had a few success stories we were welcome to speak with. I didn't bother. I thought it might not be real. And I did not want the negativity of a suspicious mind working against me just in case I did not believe the survivor. MDA had no survivors with my condition. My attitude was that if I was going to die anyway at least die trying. But still the last thing you want is to die being taken advantage of. Let's see.
The FDA requires one to wait 2 months before starting BURZYNSKI's protocol if you have done some other standard course of therapy. Just in case that other therapy may work. With a tumor that doubles in size every 2 weeks that is really valuable time for someone with not much. I'm sure in their wisdom the FDA is protecting the public. Really?
They make it as difficult as possible for one to follow this protocol. What are they afraid of? Competition for their current benefactors? I don't know the answer. All I do know is that Burzynski has been doing this for more than 25 years with results in all forms of cancer. Why on earth is this stuff not available everywhere? Why should everyone have to fight so hard to get something that may help in their fight against cancer? Contact your Senator, contact the thought police, I don't know, vote someone into office that can do something! We are being used and abused. This treatment should be approved for use by the general public!
So Jennie and I went to a meditation camp in Santa Barbara, California hosted by Dr. O. Carl Simonton. There they teach you how to find your path to healing or dying. They encourage you to live, but if it is time to die they try to help you come to terms with that. I still could not get past the going peaceful part. I wanted to fight this S.O.B. inside my head and I would not go peacefully. My affirmations always attacked my tumor. I would guide and encourage my immune system to kill my cancer. They teach this method of fighting cancer.
Once we got started at BURZYNSKI the tumor had grown back 11%. There was some discussion between my oncologist at MDA and what BURZYNSKI was saying as I was still doing my MRIs at MDA. However, this stopped after we got a call from my oncologist to say I should stop BURZYNSKI as something was going wrong with the tumor. Really? It was growing to the cerebellum or some such stuff. This call came through my brother and so I really doubt the accuracy of the call. Jennie called the MDA oncologist back to understand what he was talking about but he never returned her call. My brother really did not want me to follow the BURZYNSKI protocol. ("Why spend more money? It would mean less money for those left behind." I surmise)
Whatever. I remember Jennie and I decided that if MDA had nothing new to offer we would just continue with BURZYNSKI. If the doctor at MDA saw no reason to call back after such a scare then to heck with them. Now we think it may have been some stupid scheme my brother might have been up to. Go figure.
BURZYNSKI let us start after my insurance company covered the first 6 weeks of treatment. If the tumor did not react we were going to stop anyway.
First we went to a local outpatient clinic and had a catheter inserted in my right ventricle. We then went to the BURZYNSKI clinic for 2 weeks of lessons on how to administer the antineoplastons. We were given a battery-powered pump to connect to the catheter. Taught how to rig up the medicine to the pump. Taught how to trouble shoot the catheter, pump, other frequent troubles. Given a recommended nutrition program. Taught how to monitor fluid in and fluid out of your bladder. Encouraged to follow a low sodium diet. Drink at least 5 quarts of water per day. The antineoplastons are very high in sodium. You need to watch your sodium content. Dr. BURZYNSKI's staff is helpful and compassionate. I know you don't get FDA approval based on touchy feely stuff. But you should at least get some bonus or demerit points.
We learned how the medicine would be delivered to you. This was not a problem for us as we lived about 15 minutes away. Since the FDA requires weekly blood work (not a bad idea) we were going to be at the clinic anyway. For those living outside of Houston the medicine is shipped to you on a weekly basis. A nurse will call you every day to check on you and answer any questions you may be having. There is a department set up specifically for this. They always had our dose on hand and ready to go. Load it in the car for us. Just good service and kind to us always.
The dose of antineoplastons is built up to gradually. I was on 500 cc of A10 and 80 cc of AS2-1. I stayed on this dose for the full initial 6 weeks and then some. However, my catheter kept plugging up and my sodium levels were always getting too high. Finally, elevated liver enzymes made it so we had to reevaluate the treatment level. I eventually ended up on 330 cc of A10 and 60 cc of AS2-1 to the end of my treatment.
When I started treatment I went on 16 mg of decadron. A steroid. Coming off this steroid was tough. Finally we did it by cutting the already small pills into quarters. We then reduced the dose by ¼ each day. This was tough.
The first 6 weeks were up. Time for another MRI. The MRI indicated a 2.4% increase in tumor size. Fear and loathing. However, enough reason to continue the treatment since this type of tumor usually doubles in size every 2 weeks. I remember Dr. BURZYNSKI thought this was great. I just wanted the tumor to disappear.
Six weeks later I did another MRI. This MRI indicated a -12.9% reduction in tumor size from the previous scan or a -10.8% from baseline. Good news. Continue.
Scans were done every 6 weeks approximately after that with a reduction in tumor size each scan. Reductions of => -15.7%, -18.9%, -4.0%, -16.7%, and then another -10.7% +/-. By November 29, 2000 the tumor had reduced in size by 76.8%. This number varies it seems depending on who reads the scan. However the point is that finally the tumor had reduced by approximately -75%. The last scan I saw in April 2002 my brain stem and surrounding area looked nearly normal when compared to my scan in January 2002. The brain stem looked a little lopsided, however the gap between the stem and the brain looked normal. Hopefully the lopsided shape disappears with the next scan.
To keep my sodium levels down I had to drink at least 5 liters of water per day. I drank at least 7 to 10. Some days I would drink as much as 20 liters. I was trying to wash the tumor remains from my system. Every 45 minutes on the hour I was in the toilet. Clean kidneys. Sleep deprivation.
I would just get to sleep and then my pump would kick in. Another thing is I would sweat constantly from my head. You also smell like someone just urinated on you the night before and you have not been able to have a shower yet. That is not pleasant.
For awhile I was in a wheelchair. I just kept getting weaker and weaker. Another note: After surgery and radiation the left side of my face was paralyzed. My wife used to tape my left eye shut every night. Slowly, over the course of treatment with antineoplastons this paralysis disappeared. I don't know if it had anything to do with antineoplastons or not. It just happened. A nice bonus anyway.
In the summer of 2000 a MRI indicated the tumor had reduced by more than 54%. Shaving ice. Still I had so much to be thankful for. This unstoppable tumor was actually reducing.
By September 2000 BURZYNSKI ordered both a MRI and a PET scan. A PET scan measures the glucose uptake of cells both inside and outside the tumor area. The MRI indicated another slight reduction but the PET scan indicated all cells across the tumor region to have the same glucose uptake. No visible tumor activity. Great news. BURZYNSKI wanted to be sure so he ordered another PET scan for December 2000.
The clock on the wall was like something out of a Salvador DALI painting. Time just melted. December finally came and a repeat PET scan indicated again no tumor activity.
My tumor was officially declared in complete remission December 2000.
The plan was to remain on the antineoplastons until September 2001. This was to ensure that the tumor was dead. Can you believe it? No hope of making it out of 1999 alive and we are talking about killing this tumor?
In August 2001 I got diarrhea. Nothing would stop it. All tests could not find any pathogen in my stool. What was wrong?
The initial suspicion was colorectal cancer. Nice. Beat a brain tumor to get taken out by too much beef and not enough fiber. Great.
So off to a lower abdominal specialist. He ordered a colonoscopy, a lower abdominal CAT scan, and a liver biopsy.
First the colonoscopy. What a pleasure. The night before the procedure you take all kinds of laxatives to clean you out. Then right before the procedure they give you a sedative that luckily knocks you out. You wake up right after the procedure feeling the need to go to the toilet and understanding what it must be like to be in prison for a while. Not nice.
All clear. Now a CAT scan.
Lots more of the sick and dying. CAT scan was clear as well.
Now a liver biopsy. Takes just a few seconds but is just like getting punched in the stomach. Then you need to wait all day to ensure no bleeding occurs.
The liver biopsy indicated that I had a fatty liver but no cancer. We'll take it. Just drink more milk thistle tea.
Can you imagine? After fighting that brain tumor then another month of worrying if you may have colon or liver cancer? Nice.
Anyway, good news all around. Dr. BURZYNSKI said that I had been on the treatment long enough and that I could stop. That was September 2001.
As you can see I have been blessed. My Lord, company, insurance, wife, friends, those that supported me. I marvel at how I have been blessed. Thank God.
My treatment at BURZYNSKI was under an FDA trial. It is imperative BURZYNSKI get FDA approval to continue practicing. Terminally ill patients simply need more options. The FDA approval process is very expensive. There was an article in the Wall Street Journal in the 14th of May 2002 explaining that the FDA is too slow in approving new medical drugs and devices and costs lives due to the overburdened process. This process is very expensive (+/- $450 million) and the cost is nearly prohibitive for many small companies.
I am sure that it is very important for our wrinkles that BOTOX get to market as soon as possible. Allergan (the company that produces BOTOX) is certainly happy that such an important "break through" has hit the market with such fanfare.
A lot of people in the industry complain about how expensive the treatment is at BURZYNSKI. The treatment is expensive I agree as long as one has to pay without the assistance of insurance. But I am not sure if BURZYNSKI could even operate if he did not charge the prices he does. Further, now knowing how expensive the FDA approval process is BURZYNSKI is relatively cheap. Another thing, I compared my first 3 months of treatment at MDA and the first 3 months at BURZYNSKI and found that they both had cost more or less the same on a monthly basis. An insurance friend of mine from Sacramento, CA. told me that in fact BURZYNSKI was indeed cheaper than the standard medical regime. The current standard regime offers no hope for brain cancers. However, insurance will cover something that does not help. That makes sense, not.
I would like BURZYNSKI treatment to be less expensive as well. Maybe it would be if there was FDA approval and more patients had access to the treatment. I don't know. Just guessing. Seems logical. Insurance companies would then be more compelled to pay all or some of the treatment. People would not be out there making life and death decisions for themselves or their loved ones based on the cost of a treatment.
UPDATE June 2002
I now get MRIs every quarter and PET scans every six months. My last set of scans in late April 2002 indicated that there was no tumor activity and the tumor had reduced in size by 74% from baseline. This number is revised from the earlier 75% reduction from baseline number. Not bad for someone who was not supposed to make it out of 1999 alive.
I realize 3 years from diagnosis is not a long time. However, 3 years is a very long time for someone in my condition. Plus the outlook is good. My tumor is dead and continues to reduce in size. At MDA they were ready for me to die. No thanks.
The other day one of the doctors at BURZYNSKI's clinic told me I was a walking miracle. I know this. I thank the Lord. I pray every day. There were people all over this world that were lifting me up in prayer. From Nigeria, Indonesia, Singapore, Taiwan, France, the UK and back home. My aunt was commenting on my survival and the odds I was up against and thought that perhaps others had not had so many lifting them up in their prayers. I don't know. I do know that I have been blessed.
Miracles are possible. I often question why me? There are certainly more deserving people out there. I have not led a stellar life. I have done many things I am not proud of and would not do again. I have asked the Lord for forgiveness and made my peace. But why me? I pray for guidance now and I want to find my way.
Miracles come in small steps. And if you want a miracle I believe you have to work for it. Believe in miracles. Pray. Have faith. Meditate. Repeat affirmations. Do whatever you need to do to survive. Study and apply yourself. God lives in each and every one of us. Dig deep and bring this out in your life. Always remember cancer can be beaten. Never give up.
UPDATE October 2002
"There's a dark and a troubled side of life, but there's a bright and a sunny side too. Though you meet with the darkness and strife, the sunny side you also may view. Keep on the sunny side, always on the sunny side, keep on the sunny side of life. It will help us every day, it will brighten all the way, if we'll keep on the sunny side of life..." -The Whites, from the film sound track "O Brother Where Art Thou"
Indeed. I will try to keep it on the sunny side as well. I don't mean to make light of the situation. I just think we must remain positive.
I am very happy these days. I just had another MRI in late August. The tumor area in my brain stem is still dead and is now somewhere just over 80% reduced. I am currently not on any treatment.
I just went back to work. Same company. Schlumberger. I won't go into too much detail other than to say they really bent over backwards to accommodate me. There are not too many companies out there that look after their people as well. I can't tell you how pleased I am.
There is a patient support group meeting every Wednesday night for prospective patients here in Houston. If you decide to come they will tell you all about it. It is at the hotel where everyone stays while visiting the clinic. I go there. Tell my story. Listen to the heart rendering stories people have to tell. The suffering. I know what people are going through. I often weep while there. To myself. However, I am happy to share my miraculous story. We all need hope. If I can help you with that I feel so fulfilled. I think it is good for a prospective patient to meet a survivor. If I am not traveling I am there.
If you want to meet me while there I am most pleased to talk to anyone about my experience with antineoplastons and my journey to and from there.
UPDATE January 29, 2003
Press On: Nothing in the world can take the place of perseverance. Talent will not; nothing is more common than unsuccessful men [and women] with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. -Calvin Coolidge
Well, here we are again. Thank God. Thank all the wonderful people that have loved and supported me throughout. Thank you Jennie. My beautiful and wonderful wife. You are truly an angel. Thank you for coming into my life. I am not only still alive, due in large part to your efforts and support, but I am a better person because of you. Thank you.
I wish I could be more like you.
I did another MRI in late November 2002. No change with the tumor except that it has changed in shape. My brain stem area looks more normal. As if nothing ever happened. There is still remaining less than 20% tumor necrosis. This type of tumor scarring is normal.
I need to get this story out. Please pass this news on if you can. This information needs to get out to as many people as possible prior to going the standard treatment route. I am not suggesting that one go to Burzynski with out considering other options. What I am saying is that you need to understand very well all of your options and not just depend on your physician alone. Go to cancerguide.org and do some homework. There is a plethora of information to help. Go to amazon.com. Ask questions. Get second opinions. Dont end up down the road 2 years from now and realize that the treatment path you were advised to follow had little to no chance of success and you wish you had more information or had tried some other treatment.
I really believe that if Dr. Burzynski had more patients that were not so debilitated by chemo and radiation his cure rates would improve dramatically. Even so, I continually meet people at these patient support group meetings that are having success with this treatment. People that were given no hope and told to go home "and get your affairs in order".
No, I have no double blind studies nor reams and reams of data. I am just a guy that antineoplastons worked for. And, randomly I meet others that have and are having some degree of success with this form of treatment. Therefore, in my very basic logic I believe that if I randomly meet patients that have success with this treatment, then the actual number of success must be much higher. ???
Why is the FDA, and those that support the FDA, so against this treatment? These questions need to be addressed and answered. Is it the money? Is it the competition? Is it professional jealousy? What is the deal? Are they [FDA] really trying to protect the public? Something is just not right here and I think it is not just a problem with Dr. Burzynskis paper work.
It is imperative antineoplastons receive FDA approval so that this treatment option is available to more people. So that insurance companies will pay for the treatment. Right now insurance companies readily pay for treatments that do not work. Why not pay for a treatment that may work? Why is there so much fear and disdain for a treatment that has had so many "spontaneous" remissions associated with it?
Chris Rock, the comedian, seems to think it is because there is no money to be made in a cure. The money is to be made in the maintenance. He thinks "they" are still upset that "they" cured polio. Whoever "they" might be. Hmmm... ?
I would like to leave you with this:
The prayer of St. Francis
Lord, make me an instrument of your peace. Where there is hatred let me bring love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; and where there is sadness, joy. Divine Master, grant that I may not so much seek to be consoled as to console; to be understood as to understand; to be loved as to love. For it is in giving that we receive; it is in pardoning that we are pardoned; and it is in dying that we are born to eternal life. Amen.
This is a goal. But I can say this prayer. And I still want you to whip cancer's ass.
UPDATE January 6, 2004
Well, here I am again. It has already been one year. I can't believe how fast this year has gone by.
Just so you know, I did an MRI last month and all is still stable. What remains in my brain stem is tumor necrosis and is still about ~ 18% of the original tumor size.
I get emails and questions all the time about Dr.Burzynski. Some of the questions concern the lack of publications and clinical trials being done by the Burzynski clinic.
I have asked questions of the clinic and the answers I have received state that there are roughly 71 trials being conducted at the Burzynski clinic. From what I understand this is a very high number but all the doctors there say the same. I believe them.
Some of the other questions concentrate on the inability of people to find published results from Dr. Burzynski. Try going to www.cancerletter.com. From my understanding, some main stream journals don't let him publish as they do other scientists and doctors. What proof do I have? The man is writing and traveling all the time. He is giving speeches all the time. He is a machine. Every time I see him he is moving 100 miles an hour. The man never stops. Writing - traveling. Dr. Burzynski is a very hard working man. On this I guess you will have to take my word. After 28 years you would think someone would pay attention.
Further, in response to questions about the efficacy of Dr. Burzynski's antineoplastons I decided to gather a little more anecdotal evidence. If you will allow me to call "stories" evidence. I called 7 other brain tumor survivors from the Burzynski clinic and antineoplastons. Just before Christmas I called 7 brain tumor survivors and wished them merry Christmas. Each of them are doing fine and attribute their healing to Dr.Burzynski. Let me be very clear - if MD Anderson had produced 1 or 2 survivors I would never have left MDA. Guess who sees far more patients? Anyway, just my way of trying to pass on a little comfort with this treatment. You can call these people too. Just call the clinic and ask to speak to a survivor. Or, survivors.
I am on my way to Nigeria for my job. I have been there before. Nigerians really lifted me up in prayers and spirits when I was sick. I have many friends there.
Please visit my web site some time www.dontevergiveup.com. I have other things to say. Pass it on please.
Anyway, I just wanted to let you know I am well and kicking and still spreading the word. Keep in mind I was in a wheel chair 3 years ago. This disease can be beaten.
UPDATE April 2004
After 24 years in the oilfield I have decided to leave Schlumberger and take up a position with Dr. Burzynski. I will help him run his business while he focuses more on his patients and getting his therapy accepted by the main stream.
How often in one s life does one get a chance to make a living and help so many people?
Our mantra: Our success will help so many, our failure will help no one. -John Kehoe
Good luck and God bless.
UPDATE January 29, 2005
I have gone on disability as of December 1st 2004. For the past 6 months we have been dealing with what we have thought to be post radiation necrosis. However, I could have tumor recurrence. Maybe both.
Anyway, since I believe antineoplastons to be the treatment for brain tumors I have gone back on IV antineoplaston treatment the weekend before Christmas.
Since this is an unapproved drug Dr. Burzynski had to go to the FDA to request permission for me to participate in the protocol. I do not meet the requirements exactly and therefore I have been admitted on “CE”. Compassionate Exception. The radiation necrosis can be as chronic as the tumor so we will need to address this problem as well.
Jennie and I could use your prayers, positive energy, and well wishes.
UPDATE December 8, 2005
I wanted to give you an update before the end of the year. With the end of the year and taxes we will get into the medical recovery fund.
I want to thank you for your contributions. I know you work hard for your money and I know you are not rich. So, thank you and God bless you. It has not been easy to ask for your help. Thank you.
I have not gotten well at all. I still need 24/7 care. I can’t swallow. I get all my feeding via a tube in my belly. I cannot go to the toilet on my own. I have not been able to shower myself since April 2005. I wanted to be in better shape by now. I am not.
This sounds like a pity party. Sorry. My mind is good. Fully functional. My body is just wiped out and I just can’t seem to recover. If you can imagine what it is like to start to wake up and then start to feel awful and then you cannot walk. You want to sleep then you don’t then you do then you are all messed up again. This happens every day.
We have stopped HBOT as we have found that I have no hormone function at all. We are going to try and fix this. Maybe this is the problem. This affects strength, fatigue, weight control, etc.
I do an MRI in January and hope I have better news to report.
Again, thank you and God bless you for your help,
This CancerGuide Page By Paul Leverett. © Paul Leverett
Last Updated: May 20, 2004