Tony Tondelli

- - - UPDATE August 2004 - - -

He has MRI's once a year. The most recent, in May, was again clean. We're planning a big party this September to celebrate his 10 year "anniversary". His only medication is dilantin. He still works full time, plays golf, and enjoys his kids.

- - - UPDATE June 2000 - - -

Tony is doing great. On September 3rd, it will be 6 years since his diagnosis.

Even in retrospect, there were no symptoms, no signs. My husband Tony was in fantastic shape. At 38 years of age, he was a former college athlete and worked out vigorously 3 days a week. His career in construction design and sales was better than ever. I was a stay-at-home mom to our three children, then 7, 5, and 2 years of age. We had a great life.

Then, on September 3, 1994, Tony suffered a grand mal seizure. An MRI scan taken that day revealed a mass the size of a small egg (food seems to be used to describe sizes in medicine) at the left top of his brain, toward the front. Surgery at a major teaching hospital 4 days later was as successful as it could have been; all visible tumor was resected with negligible neurologic impact. Tony was home in 3 days. The diagnosis was gemistocytic anaplastic astrocytoma with foci of necrosis, a malignant tumor with a life expectancy of about 5 years. Although we were terrified, we took some comfort thinking at least it is not glioblastoma. That diagnosis would have meant much less time. Tony was playing golf within 2 weeks.

Tony soon began standard external beam radiation, which he seemed to tolerate very well. After about 2 weeks, however, one side of his face swelled horribly, and he experienced excruciating pain. These symptoms were dismissed as being normal by his doctors, that is, until Tony spiked a fever. A trip to the emergency room at midnight (the second trip to the ER that day) revealed a staph infection. The infection resulted in surgery early the next morning to remove the bone flap lifted during the surgery.

This time, Tony's recovery was not nearly as easy. He was in the hospital for a week and had hallucinations, depression, and a bad reaction to the seizure medication. He temporarily lost the ability to form sentences. Tony also had a central line implanted for at-home antibiotic IV therapy. Once at home, Tony's recovery was slow. It was another 5 weeks before he could resume radiation therapy.

At one point during treatment, Tony saw the term glioblastoma written on his chart. When he questioned it, the radiation oncologist said that because of the necrosis, Tony's tumor essentially was a glioblastoma. Tony and I began talking about seeking a second opinion as well as looking into other treatment options.

The radiation treatments finally were over at the end of December. Tony's medical oncologist could not give us any evidence that chemotherapy would help Tony. We felt it was time to get a second opinion and perhaps look closer at antineoplastons. We traveled from our suburban Chicago home to Houston, Texas, to get opinions from the renowned MD Anderson Cancer Center and Dr. Burzynski. I had already spoken with a dozen current and former patients of Dr. B and had heard enough to be impressed. This was important because looking at alternative therapies is not something we normally would have done. If there were even a small chance chemotherapy would have cured Tony, he would have taken it.

The doctors at MD Anderson gave Tony a diagnosis of glioblastoma. Even worse, they detected a suspicious enhancement on the MRI, which Tony's neurosurgeon felt was bleeding or scarring. The doctors at MD Anderson recommended a clinical trial involving chemotherapy. We decided to see Dr. B.

We began antineoplaston therapy 2 days later on January 21, 1995. I say "we" because it was very much a team effort. Luckily, I already was well-schooled in home infusion therapy because of the staph infection. The same infusion pump was used previously, too. And we knew enough to have kept the central line in Tony's chest just in case we were to choose this option. I already knew how to change the medicine bags, flush his line, and change his dressings. He could do most of this as well. We were able to leave Houston in half the usual time.

The only side effects Tony noticed were fatigue and sometimes chills during the infusion, which for him was 1 hour every 4 hours. The fatigue was not debilitating; he just needed a nap every day. He was able to work at about 80% capacity, he played basketball for 90 minutes three times a week, and he played golf, although his jumps and tee shots weren't quite as high or long. With all of the fluid coursing through his body, Tony had to get up four to five times every night to urinate. His blood test results usually were fine, except for an occasional decrease in his potassium and increase in uric acid levels. Both of which were easily remedied. Antineoplastons have an unpleasant odor, but we got used to that very quickly.

Tony's neurosurgeon and radiation oncologist were accepting of the therapy but not encouraging. After 6 weeks, another MRI was performed and the results were read at our local hospital, where all of Tony's scans had been performed. The suspicious enhancement was shrinking. Tumor regression? We will never know for sure.

Eight weeks after that, the scan was clear. We returned to Houston. According to Dr. Burzynski's protocol, Tony would need to be on treatment another 8 months. Dr. B was excited but cautious. We would need to go to Houston twice more during treatment to pick up medicine and consult with Dr. B. With 1 month left to go, Tony's catheter line became infected, and he had to spend a night in the hospital and have it removed. Luckily, the local doctor agreed to have a line put in his arm to complete the course of antineoplastons. During that year, we were absolutely committed to the treatment, almost never missing a dose. I think that is one of the keys to our success. Soon after ending treatment in January 1996, Tony was back to full strength.

It is now winter of 1999. All of Tony's brain scans continue to be clear. When he made it to the 2-year postsurgical anniversary, Tony's radiation oncologist congratulated him and said he was one of the lucky ones. The radiation oncologist says that he can't be sure whether the antineoplastons helped, but he won't discount it. Dr. B is optimistic, and so are we.

Our lives have regained the hue of normalcy. Tony's at the top of his career, and last summer he coached our son's baseball team to a championship.

Tony has a scan every 6 months now. He never did get that bone flap replaced (no more surgery!), and his hair didn't grow back. However, with a protective helmet for basketball and a "membership" in the Hair Club for Men, it doesn't matter. Our children are now 11, 9, and 6 years of age. Life is great again.

Terry Tondelli

March 18, 1999

This patient has requested to be contacted through Burzynski Patient Group. <maryjo@siegel.net>