My husband was diagnosed on October 25, 2004, and was told the tumor was located in his rectum, extremely large, and was on the verge of breaking the outer barrier. It was considered Stage 3/4. It was grim.
He is 63 years old and a retired pilot. They wanted to give him chemo and radiation pre-surgery and they were hoping to shrink it by 15-35%.
He had no symptoms except for the last 3 months before diagnosis and it was nothing really. Never had any pain whatsoever and only a small amount of bleeding right before the colonoscopy. He had a small red bump on his back -- just one -- and the doctor diagnosed it as shingles and the doctor ordered the colonoscopy.
At least our family doctor who was connected with a large hospital knew things didn't look right. I'll miss him as a doctor, for sure. See, shingles is an autoimmune disorder -- which to me is a warning something is wrong.
Years gone by when I was still working in the legal field, I read about Dr. Burzynski and how the FDA was trying to shut him down even though he had been able to help cancer patients, basically in a more humane manner.
Dr. Whitaker of Newport Beach, CA., has written about Dr. Burzynski extensively in his newsletters, which I get, and asked everyone to donate to the legal defense fund for Dr. Burzynski, which I did. Dr. Burzynski eventually prevailed against the government.
My husband went to the hospital in Seattle, WA and listened to what the surgeon, oncologist and radiologist had to say, and then he got on a plane and went to Houston, TX to interview a doctor at the Burzynski Clinic.
He made an informed educated decision to go with the Burzynski plan. After he decided that he would go to Burzynski, he had a PetScan ordered by Burznski, and then he went to Houston for 10 days during which he was evaluated for treatment and the treatment began within days of arriving there.
He went to the clinic every day, taken there by a shuttle bus from the hotel he was staying in. They want you there to see how you do with the treatment, basically to see if you need adjustments of any sort. The Burzynski clinic used Erbitux on my husband, along with oxaliplatin, and xeloda.
He was also given amino care (acids) sodium phenylbutyrate. He was not given any irinotecan or 5FU in his chemo. He left there and was able to continue his treatments at our home in the Seattle area, never having one sick day.
He also went to a naturopath we have dealt with for at least 15 years in the Seattle area, and was given PolyMVA to deal with side effects of the chemo agents and to protect his immune system. He was also given various other supplements.
We tried to get an oncologist in the Seattle area to give my husband the chemo as per the Burzynski Clinic protocol and all refused. We actually went to three different oncologists. We even went to a cancer clinic that deals with some alternative medicine, but even that oncologist told us we were nuts basically.
At all times we were polite and were only asking to participate in our medical care, but in all instances we were told that it was not the "norm." I asked who sets the "norms" but it was all to no avail. Since no oncologist in the Seattle area would give the Burzynski Clinic request for chemo given a certain way, my husband got on a plane once a week at night, arrived in Houston, spent the night, went to the Clinic early in the morning for his 3-hour treatment, caught a ride to the airport and came home the same day. Again, never sick in any way.
So, it was a down and back trip. We did hear from the Clinic that other people were able to find oncologists around the U.S. to help them in their various areas, but we couldn't in the Seattle area. We only saw three oncologists, but we made many phone calls to others.
So, it was inconvenient, but it was worth it. Some people my husband met and spoke with people who would drive themselves to Houston once a week and sometimes it would take them 2-3 days just to drive there.
After two months of the treatments from the Burzynski Clinic he was asked to get another colonoscopy, which we did in Seattle. The doctor at the hospital in Seattle was astounded and the nurse came out to tell me that my husband's tumor had shrunk 95%. The nurse knew about Burzynski, which was interesting, but was hesitant to say anymore, but told me she knew about his success.
We have both the first colonoscopy and second colonoscopy pictures and it is amazing. The Clinic told my husband that he should have the remaining 5% removed by surgery. We went back to the Seattle hospital and the surgeon removed the remaining cancerous tissue, and my husband had to have a "stoma" for two months. The surgeon that performed the surgery on my husband said the small tumor was in a position where my husband still had to have his rectum removed. So, we had to wait 2 months while that area healed and then he had to go back for the "re-connection" surgery.
The surgeon felt that my husband should have radiation before the re-connection, and my husband spoke with the Burzynski Clinic. They felt that my husband should make the decision. So, my husband and I spoke with the radiologist at the hospital and the radiologist told us that should the cancer come back in that area, that it is particularly "obnoxious." My husband made up his own mind and decided that he would have the 5 weeks of radiation before the second surgery, which he did in Seattle.
This whole time my husband was still taking xeloda (except for a period of time before the first and second surgery and during radiation), the sodium phenylbutyrate and the amino acids, as well as using the PolyMVA. He had a varying schedule with Erbitux and oxaliplatin, but finished that protocol earlier than the rest.
He was also off everything while in the hospital. He then had his second surgery and was basically reconnected and the surgeon did a "J-pouch" for him -- which basically is a way of building a rectum for a person. He healed very fast, never lost a day eating anything!!!!
He has made lifestyle changes in that he drinks more water and very little coffee these days and uses psyllium for extra fiber. He has always been an active person. He is scheduled for another colonoscopy next March in Seattle.
He has also been given a schedule to keep as far as having his blood taken for testing every 3 months for the next year. He is still taking the sodium phenylbutyrate and Amino Care from the Burzynski Clinic, as well as the PolyMVA. and will do so for another several months, but he has been declared cancer free by everyone.
The surgery performed on him is new and should be performed by knowledgeable surgeons. Since we now live in AZ, we tried to go to a gastroenterologist here in Phoenix, AZ, and after examining my husband, the gastroenterologist said he had never seen this type of surgery and sent my husband to a surgeon specialist.
The hardest part for my husband was getting used to going to the bathroom again and he had to stay near a bathroom facility. But, then we find out that it could have been as simple as taking Immodium -- apparently it not only helps diarrhea but also make the colon more pliable.
You'd think they would put that in writing. His feet also got a little sore from the xeloda, but we kept them very well moisturized and that was about it. Well, today is the 8th of September, 2005, and he is back in Seattle, WA, and has been given a clean bill of health. He has been staying on our property on Whidbey Island, working the land.
Again, he was never sick one day, never nauseated, never lost hair, no weight loss or gain, no soreness -- except for that little foot thing -- you just would never guess he was ever ill. We do have all medical records and lab reports from all doctors involved, all the medical billing, copies of all colonoscopy pictures and the petscan.
Now to the insurance company. The insurance company, of course, paid for anything that related to the surgeries and approximately 60% of the Burzynski Clinic bill so far. We are in the process of appealing some of the insurance company's denied claims.
Dr. Burzynski is a doctor, certified by the State of TX, and obviously knew what he was doing when it involved my husband's cancer. But, we will deal with the insurance company. I can tell you that one hospital stay with surgery was at least one-half of the Burzynski Clinic bill and the insurance company didn't mind paying that. You can research Burzynski online. We feel we used the best of both worlds.
But, again, all the doctors in Seattle, which is supposed to be such a progressive state of mind state, would not help us at all. If you research Burzynski online, you will also gain information as to what hotels give discounts and what airlines give discounts.
In my opinion, I believe what the mainstream medical community is missing here is sometimes it is not really the dying that scares people, but the journey you are made to travel while dying.
Do we really have to go to hell and back in this fight against cancer to survive, or is there a more humane way of treatment. We helped a friend of ours for 4 years battle cancer and he even had a stem cell transplant in Fairfax County, VA.
He would not go to see Burzynski, just didn't believe in it. He lived on the East Coast and it hard to find good alternative practitioners back there compared to the West Coast. His treatment cost over $2 million and he was out of pocket $250,000, and he was on Medicare with Medi-Gap insurance.
Who knows if he could have been helped -- I believe he could have -- but, just as importantly it was the total lack of quality of life that he had that made it worse. It was unbelievable what he went through. He had to go to the oncologist 6-7 days a week -- no kidding.
I would go there and stay anywhere from 5-10 days and go with him to the oncologist's office every morning. He was a walking talking drug addict by the end and half the size he had been when he was diagnosed, and you couldn't blame him for taking all the drugs because the pain was unbearable for him.
His oncologist at the hospital even knew he was still driving a car but never said you can't drive anymore because it is too dangerous out there for other people -- not just you, but other people.
As a side note, after our friend died, I had the task of cleaning out everything for his mother, who was 87 years old. I had two 45-gallon plastic bags full of toxic dangerous drugs, which included Oxycontin patches, boxes unopened, and the oncologist would not even taken back these dangerous drugs to dispose of. Tried to give lots of unopened drugs to hospice and they wouldn't take any of it because of liability factors. Took the drugs to two hospitals, which refused to dispose of these, and each and every pharmacist told me to flush them down the toilet.
Called Prince William County and Fairfax County looking for some help and both offices of these counties told me to flush them down the toilet. I finally took them to another smaller hospital and the pharmacist there threatened to call the FDA, which I told him to do, and instead he called a DEA agent that I spoke with.
I told him that I had all these drugs and wanted them disposed of in a safe manner, and he told me to flush them too. I told him that since we had to have a doctor give a prescription for these dangerous drugs, that something should be done to dispose of them when a person dies,and that I would instead take the two 45-gallon bags down to the Washington Post and wait to speak with a reporter to see if they would help me.
The DEA agent then spoke with the hospital pharmacist who was ordered to take some of the drugs from me. I had a whole list prepared and made the pharmacist sign for them-- he didn't want to sign for them and I told him to tell that to the DEA agent.
The pharmacist was furious because he said his hospital would have to pay to dispose of these drugs. They didn't mind dispensing, prescribing and/or selling them, but didn't want to dispose of them in a safe manner. It was amazing.
If the bad guys even knew I had these drugs in my car, they would have taken them. And I also asked the DEA agent if I could just like give the drugs away to anyone, and he told me if I did that I could be arrested, BUT it was okay to flush them down the toilet into the ground water of America -- or at least Virginia.
But, think about that -- how many people in America are throwing dangerous drugs into the toilet after their loved ones die because no one will take them back? Wonder if that has anything to do with cancer rates in America. Just an aside issue.
Anyway, hope all this helps someone else. If someone wants to see all the medical reports, pictures, I guess I could black out my husband's name, etc. It depends on who would make the request.
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