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Cancer Cure Coalition Chief Addresses Right-To-Live Day Rally 9/18/07, along with Frank Burroughs and Bruce Towers
Bruce Tower
I'm not a speech writer or an eloquent speaker. I'm just a guy who has a story to tell. First, I apologize for the funny way I talk but I am from Tool, Texas about 80 miles southeast of Dallas. We have a whopping population of 2,275 people and I often have an East Texas twang. I would like to start by giving y'all a chronology of my disease and my decision processes that brought me to Provenge. Playing the macho male part and not going to a doctor for seven years, I lived with a double inguinal hernia which masked the symptoms of my prostate cancer. In 1996 when I had to lay down on the floor and push them into place 3 to 4 times a day I decided to have them fixed. After the surgery I still had testicular pain and an intermittent stream. I was sent to yet another doctor who found a benign growth on the testicle and removed it. The intermittent stream persisted and I was sent to a urologist who felt a prostate as hard as a rock and told me he thought I had cancer but we needed to do biopsies which we did. The Saturday before I was to get the results of the biopsies I got a letter congratulating me on my PSA of 3.2 thus I believed the hard prostate was due to calcium deposits and not cancer. Feeling great I went to the doctor on Monday to get the results of my biopsies and was told not only did I have cancer but advanced cancer. All four quadrants were gleason scores of 7 with 10 being the highest. I was devastated emotionally, the "C" word is very scary initially. It was the first time as a man I cried uncontrollably. Then started my impossible decisions. That is how I refer to cancer as a sequence of impossible decisions. No doctor wants to give you a definitive course of action so all we can do is make the best informed decision we can. The inevitable "quality of life" decision comes into play. I made the decision to radiate instead of eradicate or remove the prostate. I was 47 years old and I didn't want to be incontinent or have erectile disfunction. I played soccer and coached soccer by example. I hunted deer in tree stands and tripods. Being incontinent was not going to work for me. I was advised if, and only if, we knew the cancer left the prostate, removal wouldn't be a viable treatment. So we radiated and I stand here before you today with tubes, nephrostomy tubes, in each of my kidneys coming out of my back to bags on my legs. I have no functioning bladder and all this was due to radiation scar tissue in my bladder and my ureteral tubes. Perhaps, radiation wasn't the course of treatment I should have selected eleven years ago. As cancer patients we need to live with our decisions and don't look back. In 1999 my PSA numbers started to rise and I decided to try hormone therapy, Lupron, which fills your body with female hormones in an attempt to fool the cancer cells which feed off testosterone. I developed hot flashes, lost my body hair and grew "man boobs," as my girl soccer team refers to them; actual female mammary tissue in my breasts. Due to the concern with my history of cancer I had to have a mastectomy as a result of a growth in my left breast. In 2002, I went into Casodex therapy which removes or masks all the testosterone in your body, this worked for nine months and "rogue" cells started up with the PSA climbing once again. I was advised of a steroid treatment which was the next course of action I chose. I would not recommend steroids to anyone!!! In 2003, I was 200 pounds. Today, I am 270 pounds but in the first six months of steroids I gained 140 pounds and the side effects began. I developed DVTs, (blood clots), and have to take blood thinners for the rest of my life. I developed sleep apnea and must sleep with a "cpap" machine and mask over my face every night and I couldn't remove the fluid from my legs. My legs got so large the calves cracked and oozed fluid. We found out the radiation destroyed my inquinal lymphatic system which removes the waste fluid from your waste down. I went to Lymphatic therapy with pressure bandages on each leg from my thigh down to and including my toes 24/7 for 30 days with large doses of lasix to force the fluid out. The worst side effect was my change in personality and my "roid-rage" so I advised the oncologist I wouldn't go any further with the steroid treatment. I went for a year with no treatment but an increasing PSA. In July of 2005, after a visit to MD Anderson in Houston and the suggestion that early Phase I studies of Provenge showed perhaps there were "survival tendencies," I turned my body over to research with the Mary Crowley Cancer Research Center in Dallas, Texas. I was accepted into the Provenge trial in November 2005 and started the harvesting of my dendritic immune cells in January of 2006. For those of you who don't know about Provenge, two complete body volumes of blood were cycled out of my body capturing my dendritic immune cells which they send to a lab to have manipulated with a prostate protein molecule. These "tailor made" prostate cancer immune cells were infused back into my body. This procedure was done four times. The doctor at Mary Crowley likened it to letting Pac-man loose in your body eating up prostate cancer cells. They call it a vaccine but it is a little more than that. When I started Provenge my PSA was 36.5 and I had an active lesion in the bone of my left hip and irregular lymph nodes in my pelvic area. After Provenge I had a 14.5 PSA, no active lesion and no irregular lymph nodes in the pelvic area. I don't know for certain I got Provenge as it was a double blind trial, however, it is difficult to think I got these results from placebo. I believe I was one of the 250 men who got the vaccine and here I stand before you after one year and nine months. The hypocrisy of it all is that over 50,000 men have died since I received the vaccine without the ability to have the opportunity to perhaps enjoy life a little longer. In the past year I have had four surgeries, or procedures as we refer to them today. I had an IVC filter which is a contraption placed in your inferior vena cava (the main vein to your heart) that slices a blood clot into a hundred pieces without any affect or death from a blood clot gone wild. I had a TURP, or "roto router" as I refer to it, to remove scar tissue in the urethra to allow urine to flow. I had stents placed in the kidneys to also allow urine to flow and the the bladder stopped functioning. Just four weeks ago I had a squamish carcenoma removed from behind my left ear. The poor physician's assistant didn't know my history. He came out nervous, concerned, and sympathetic to tell me I had a cancer. I smiled, told him my history, thanked him for his sincerity and that to me this was nothing more than the removal of a mole. I no longer look at the "quality of life" but the "quantity of life" (the aspect in which my life is measured). Yes, I am in pain 24/7, I have tubes in my kidneys, I am obese, I often have to use a wheelchair but it is the "aspect in which my life is measured." I have four loves in my life; my wife, my family, soccer and hunting. I love my wife more today than I did 36 years ago. She has taken our vows of "in sickness and in health" to the nth degree. Often our cancer is tougher on those who love us and are our caregivers. I still coach soccer two to three times a week and we play on weekends. My teams have been a reason to force me to get off my "duff" and do something no matter how bad I feel. I force myself to be at practices and games. I enjoy hunting immensely. It is my release from everything. I have adapted and today I hunt out of a ground blind or an elevated deer stand. My family ties have strengthened. My mom and dad moved from Arizona to be close to me and help me with my illness, hospitalizations, surgeries and doctor visits. I believe Provenge slowed my cancer and I have gotten to see and enjoy my daughter's two year old son, my son's two year old son and seven month old daughter. Just last week I went to grandparents day at my granddaughter's and grandson's daycare. Do you know what it means to have your granddaughter's back to you in the daycare and you say, "is that Pa Pa's girl?" and she turns around and smiles at you with those big beautiful hazel eyes. Do you know what it's like to have a grandson respond to "do you know who loves you?" and he responds, "Papa Bruce" or when the other grandson says " I yuv you Papa." That is what Provenge has given me. Why should the 30,000 men who will die in 2007 not have the same opportunity? If the concern for more studies is to determine side effects, who cares!!! Every treatment I have had I have suffered from side effects and if I am terminal it should be my option to endure any side effects. From my perspective, it has been well worth it. The hypocrisy of it now is that my PSA is again rising. We have not found evidence of disease growth but if we did; I can't get a "booster" or other treatment because I am in the study and the strict guidelines don't allow me to get treatment because my creatinine cannot exceed 2.0 Due to my kidney failure my baseline is 3.0. I am not allowed to get to experimental drugs if I am not in a clinical trial. Now I can't get treatment just like the 30,000 other patients this year. Just Thursday, my urologist at the VA said he hoped the FDA would do something. He has 400 patients who could use Provenge. So here is my plea; FDA and Congress please, please allow us to use experimental treatments. If you do I may be able to get a booster. I may be able to hear my granddaughter say "I love you Papa." Remember it is the aspect in which my life is measured and that is measured by me and not you!!! We have hope and we have faith. What we need is help!!! For more information on the law suit and rally, go to www.CareToLive.com
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