STATEMENT IN SUPPORT OF APPROVING PROVENGE

 

MY NAME IS ED GROVE AND I HAVE BEEN CHAIRMAN OF THE INOVA FAIRFAX, VA PROSTATE  CANCER SUPPORT GROUP FOR A DECADE.

 

I CURRENTLY HAVE A SLOW GROWING RECURRANT PROSTATE CANCER. IT IS ASYMPTOMATIC BUT PROBABLY NOT METASTATIC AND CERTAINLY NOT NOW HORMONE REFRACTORY.

 

HOWEVER, I STRONGLY BELIEVE PROVENGE COULD HELP ME IN MY SITUATION AND HAVE TRIED TO GET ON EXISTING PROVENGE TRIALS TO NO AVAIL BECAUSE THEY ARE ONLY FOR MEN WITH VERY ADVANCED DISEASE.

 

THOSE OF US WITH RECURRANT DISEASE MUST BE WARRIORS ACTIVELY FIGHTING THIS DISEASE RATHER THAN PASSIVE SURVIVORS .

 

CONSEQUENTLY, I BELIEVE WE PROSTATE CANCER WARRIORS NEED ALL ARROWS WE CAN GET FOR OUR QUIVERS AND PROVENGE COULD BE ONE OF THEM PARTICULARLY SINCE IT COULD STRENGTHEN OUR IMMUNE SYSTEMS.

 

INDEED, MY IMMUNE SYSTEM HAS PLAYED A CRUCIAL ROLE IN MY JOURNEY WITH PROSTATE CANCER.

 

DIAGNOSED WITH EARLY STAGE DISEASE IN 1992 AND AFTER HAVING RADIATION IN EARLY 1993, I WAS DOING FINE (PSA 0.6) UNTIL RECURRENT THYROID CANCER IN 1997 CAUSED ME FIRST TO GO OFF MY THYROID MEDICINE. THIS SUBSTANTIALLY REDUCED MY METABOLISM. THEN, I WAS ZAPPED BY A SIGNIFICANT DOSE OF RADIOACTIVE IODINE WHICH COMPROMISED MY IMMUNE SYSTEM.

 

THE GOOD NEWS IS THAT MY THYROID CANCER WAS DRIVEN INTO REMISSION AND HAS NOT RETURNED. HOWEVER, DURING AND FOLLOWING THIS TREATMENT MY PSA ROSE AT ONE POINT TRIPLING IN ONLY 9 MONTHS. FORTUNATELY, AS MY IMMUNE SYSTEM RECOVERED, THE PSA RISE SLOWED.

 

DURING 8 YEARS FROM 1998 TO 2006 I WAS ABLE TO SLOW FURTHER THE RISE OF MY PSA. THIS WAS BECAUSE I FOUND THREE NON-INVASIVE ARROWS FOR MY QUIVER.

 

THE FIRST WAS THE ACTIVE FORM OF VITAMIN D CALLED CALCITRIOL.  A SMALL STUDY BY DR. THOMAS STAMEY AT STANFORD SHOWED THAT CALCITRIOL MARKEDLY DECREASED THE PSA DOUBLING TIME OF RADIATION AND SURGERY PATIENTS WITH RECURRANT DISEASE. IT DID A GOOD JOB OF SLOWING MY PSA FOR 2 YEARS.

 

I THEN BEGAN TO USE THE ALPHA 5 REDUCTASE INHIBITORS -- FIRST PROSCAR AND LATER AVODART. THIS SECOND ARROW WORKED FOR 4 YEARS.

 

HOWEVER, AFTER THIS TIME, MY PSA HAD REACHED THE MID TEENS. THEN, I SAW A WEST COAST STUDY ON LEUKINE BY DR. ERIC SMALL WHICH SUBSTANTIALLY INCREASED THE PSA DOUBLING TIME OF MOST MEN WITH RECURRENT PROSTATE CANCER. LEUKINE KEPT MY PSA STABLE FOR TWO MORE YEARS BEFORE MORE IT REACHED 18.

 

BECAUSE OF THIS, LAST FALL I WENT ON TRIPLE HORMONAL THERAPY. IT IS WORKING WELL, AND I HOPE TO STOP IT AFTER A YEAR OR SO.

 

WHEN I GO OFF HORMONAL THERAPY AND KNOWING PROVENGE LIKE LEUKINE ALSO STRENGTHENS THE IMMUNE SYSTEM, I WOULD HOPE PROVENGE WOULD AT LEAST BE AVAILABLE THEN FOR MEN WITH ADVANCED DISEASE. THIS IS ESPECIALLY TRUE SINCE CLINICAL TRIALS OF PROVENGE HAVE SHOWN SIGNIFICANT ADDITIONAL SURVIVAL FOR MANY MEN WITH VERY ADVANCED DISEASE.

 

ONCE PROVENGE BECOMES AVAILABLE, I BELIEVE THERE IS THE FURTHER POSSIBILILTY THAT MEN WITH LESS ADVANCED DISEASE AND GOOD IMMUNE SYSTEMS LIKE MYSELF COULD ALSO BENEFIT MARKEDLY FROM IT. I REALLY WOULD LIKE TO SEE PROVENGE BE THE FOURTH ARROW IN MY QUIVER