Promising Viral Therapy
In April of 1997 Gary White was diagnosed with advanced stage peritoneal Mesothelioma. Employed as a program administrator with the Connecticut Department of Mental Retardation, he had spent the first twelve years of his career at a residential facility closed in the late 80's at least partially due to high levels of asbestos found present in the buildings there. At 44 years of age, married 24 years and the father of two college students, he found himself with the most dire of prognoses. Doctors from Hartford to Boston to New Haven had little to offer. He was referred to a most extraordinary and gifted surgeon from Columbia Presbyterian in N.Y.C., Dr John Chabot, who was willing to attempt a debulking surgery. During the six hour surgery a 6.2 kilo ( 14 lb.) mass was removed and a portocath was installed for the infusion of chemotherapy, specifically cisplatinum, adriamycin and later interfueron gamma.
After a few months of recovery from surgery, chemotherapy commenced. Unfortunately complications ensued and the port became infected cutting short the therapy and requiring emergency surgery to resolve and repair blocked and damaged intestines. The outcome was an extended hospitalization, loss of 70 lbs. and a close call with death. However, determined to survive, he gradually built himself back up to his 6'3" and 220 lb. normal self through regular exercise and weight lifting. By early in the summer of 1998 he was ready to resume the fight.
Cat scans at two month intervals revealed the disease progressing to dangerous levels once again. He was offered a multiple choice of experimental chemotherapies, none of which appealed. By chance he learned of a Phase 1 clinical trial being offered at the Hackensack University Medical Center headed up by Dr. Andrew Pecora for victims of solid tumors who had failed to respond to conventional treatment. The treatment involved the injection of live avian (bird) virus 3 times per week for two weeks with two weeks off between each series. He was accepted as the only mesothelioma patient in the study of approximately 25 patients. Initially the treatment made him quite ill with extreme flu-like symptoms but gradually the body became acclimated to the virus so that after two years on study he suffers no side effects at all.
Treatment began in January of 1999. After nine months of no significant disease progression he elected to have one particularly threatening mass in his lower pelvis removed by Dr. Chabot in New York. Tissue samples from the surgery were provided to ProVirus and a lab called Oncotech for analysis. Oncotech cultures tissue and subjects them to various chemotheraputic agents to find something effective. The results were startling. Oncotech couldn't get any tissue to grow. The Provirus Pathology Report revealed very encouraging findings as well.
Gary resumed treatment as soon as he recovered from the surgery. His tumors have not significantly shrunken but neither have they grown. Meanwhile he continues to golf, play basketball and renovate the sailboat he hopes to someday sail around the world. He enjoys life unencumbered by this most horrible disease. He welcomes inquiry and can be reached at (860 429-7880) or by e-mail at gwhite0@snet.net. While the study he is on is currently closed there are plans to either reopen phase 1 or begin a phase 2 in the very near future.
** ORIGINALLY POSTED OCTOBER 30, 1997 and Updated on FEBRUARY 2, 2001 **
An Update -- 8/20/01
Gary is continuing with his avian-virus therapy at the same pace, in which he is treated with the PV701 form of the Newcastle Disease Virus (NDV). As a result, after two and a half years in the study, his tumor has not shrunk - nor has it grown.
Gary did have a CT scan about two weeks ago for a mass in his lower right rib cage. The exact nature of the mass has yet to be determined, although there is speculation that it is an adenocarcinoma that is a byproduct of his tremendous exposure to radiation and viruses. He will be having the mass removed at Columbia-Presbyterian in New York in the first week of September, and then sent off to Provirus for testing.
Despite this inconvenience, Gary remains optimistic. He has survived mesothelioma for over four and a half years and done so on his own terms. With a prodigious tumor and a diagnosis of advanced stage peritoneal mesothelioma in 1997, his prognosis was not good from the start. He fought back, working out in order to strengthen his body, and educating himself to bolster his resolve. Doctors advised against the clinical trial at the Hackensack University Medical Center, but two and a half years later, Gary credits the virus therapy with saving his life so far, and wonders where he'd be if he had taken a passive role in his treatment.
As Gary puts it, "You must be a strong-minded, strong-willed architect of your own care if you're going to survive."
Today, Gary has seen his daughter graduate from college, his son begin his senior year in college, and he continues to play golf and basketball, as well as serve as an inspiration to mesothelioma patients everywhere who learn of him and contact him. He cautions them that whichever treatments they choose to battle their diseases, they're going to get knocked down harder than they've ever been knocked before. The question they must ask themselves is, do they have - do they want to have what it takes to get back up and keep on fighting?
That kind of positive attitude is what keeps Gary going through the two weeks of treatment every month - that - and sailing.
A New York television station that had heard of Gary's remarkable story sent out a crew to visit him three weeks ago and held an on-camera feature interview. The interview itself will be running soon, and discussions during the interview led to Dr. Frank Fields - who interviewed Gary - to talk with network producers at Good Morning, America about a possible serialization of Gary's planned sailboat trip around the world.
Gary's plans would make Frank Lloyd Wright blush.
An Update -- 6/6/02
Gary underwent surgery in March to remove a tumor the "size of an orange" as well as two of his ribs. He jokes that it was interfering with his golf swing. He took three weeks to recover, after which his doctor advised him that he probably shouldn't sail for a time.
He has a CT scan scheduled for June 5, and he has resumed treatment with the Newcastle virus after a ten-week hiatus from the treatments. Gary is also proud to say that he saw his son graduate from college in May, shortly after he celebrated five years of surviving mesothelioma in April.
An Update -- 8/8/02
Gary underwent surgery July 16 to resect one of four new masses discovered during a CT Scan taken in early spring. The mass measured 16 x 16cm. During the surgery, Dr. Chabot removed portions of the lower rib and sewed on Teflon patches. Dr. Chabot felt the remaining three masses were much more involved and would not attempt to resect. Within two weeks after surgery, Gary began to experience a constant, low-grade pain which he tolerated but noticed the pain increased when he ate. He also developed gastrointestinal side effects from the Vioxx he had been prescribed.
Gary has resumed treatments with the Newcastle virus. He had his first dose August 5th. He tells us that 90% into the treatment, he experienced an "episode", either a seizure or fainting spell. Gary remembers thinking something bad was going to happen, losing consciousness then opening his eyes and seeing a crowd of people gathered around him. Others were running around hooking him up to fluids. He said, "Someone asked me, 'Do you know who you are?' Unfortunately, I did." The blood work taken during this "episode" revealed Gary was a quart low on blood. He will resume treatments once he gets his blood count back to a safe level.
He currently experiences some lethargy, achiness and feelings of anxiousness to resume treatments as he now knows all too well taking a long break from treatments can give this disease time to do some damage.
Gary becomes quite philosophical when it comes to trying to explain his survival of mesothelioma for five and one-half years, living CT Scan to CT Scan, and how getting involved with the Newcastle virus study has been a God-send. The bittersweet side to this is that Gary is the last surviving member of the Phase I study which has been closed for quite some time. The FDA has a hold on Phase II until the issues relating to managing this "live virus" and its doses have been resolved. According to Gary, Canada is opening up a Phase I clinical trial.
Gary had high hopes of sailing his boat circuitously from Antigua to Trinidad but was forced to settle with sailing from Antigua to Ft. Lauderdale to place his boat on the market. He's done some golfing and hopes the next round he plays, he can actually walk the course.
Mr. White passed away on March 14, 2003
Dear Sirs,
I realize this is a "shot in the dark." I just learned from your website that Mr. White has passed away. I had no idea of his condition at all, let alone it's dire nature.
If you'll permit me just a couple of minutes, I'd like to introduce myself. My name is Jason Cilio, and I met Mr. White at the Virgin Gorda Yacht Club in December of 2001. I was on vacation at the time, chartering a 36' Jenneau out of Nanny Cay. I was nearing the end of my trip, having only a few days left on a near 3-week charter, when our paths and dock lines crossed as I rather "ungracefully" docked in the slip alongside his Spindrift 43 - Anam Cara. I was with my (then) wife who has never been much of a boater, and neither the wind nor the current were in our favor. Gary came to the "rescue" and his assistance at the dock was tremendously appreciated.
After we got the Jenneau docked, Gary invited me aboard - despite the blood gushing from the self-inflicted cut on my foot as I leapt across the deck to secure the bowlines during the docking. He was very proud of his boat, and if memory serves me right was "in between" crew having just sailed up from Venezuela. I could be wrong on his port of departure, however I am CERTAIN that it was Gary and the Anam Cara. He even gave me his card after explaining the origin of the boat's name - "Soul Friend" in Gaelic.
None of this however, is what has prompted me to write. After a short tour of the Anam Cara, Gary and I had struck up a very comfortable conversation (to me), something that in this day and age is rare - although more common among cruising sailors. Gary shared stories of his recent passage, of a significant following sea which had fouled his Diesel engine, and left him and another crew member suspended upside-down in the engine compartment doing everything possible to drain the "foamed", water contaminated fuel from the system and install a fresh fuel filter while the boat battled the seas. Its a story that I will never forget being told. He wore a T-shirt with a detailed line drawing of the Anam Cara on the back and showcased his vessel with pride. Perhaps the most significant thing he said, and what has kept his memory alive for me for three years - was "I can see its in you, and that you'd be good at it - you should cruise." In minutes I'd developed such a respect for him and his vessel, that the compliment was not taken lightly and, obviously not forgotten.
It is simply unbelievable to me to have read his story - Gary mentioned not a word of this that day. He said only that he was headed to Florida when his next round of crew arrived, and even joked that I should consider going along. He spent his time talking about sailing, adventure, and even encouraging me to "follow the dream." Not once did he mention his own health in connection with his sailing.
In closing, I just want to say that I only knew him maybe 1 hour, but he touched my life. Someday I hope to take some time and do some distance cruising myself. I am saddened that I wasn't able to do it sooner so that I could reconnect with Gary let him know about it as he'd encouraged. I . My resolve to do it strengthened however, having read his story.
I do not obviously know the nature of your relationship with Mr. White, however if there is any way to pass this note on to his family I'd appreciate that because I know if were it my Dad, I 'd be so happy to hear something like this about him. I knew him so very briefly, but I don't doubt for a second that 90% of the people who crossed his path would say similar things.
I'm terribly sorry for the family's loss! , and am grateful for having made his acquaintance at all. Be sure, that on launch day of my own journey, I will hoist a toast in his memory.
Very Best Regards,
Jason R. Cilio
October 25, 2004
