Thursday, July 5, 2007

Introduction

Hello,
My name is Rick Harvey, I live south of Atlanta but am originally from Maine. I am currently 44 years old, married with 2 daughters 20 and 19.
In August of 2004 we bought a new house in the area and I did a self move with the help of some friends. Shortly after that I started having lower back pain. Not thinking much of it, I went to a chiropractor for what I hoped would be some relief. It only made the back pain worse and started tingling in my left foot. I also had some pain in my testicles so I went to see a urologist in November 2004. I got a prostate exam and some antibiotics but no relief so I went to a neurologist for the leg tingling. He immediatley sent me for a CT scan which revealed a large tumor on my right kidney. I took the films back to the urologist on December 23rd 2004 where he informed me that I had Renal Cell cancer on my right kidney and that it had grown out of the kidney into the vena cava and up above the diaphragm. I remember being stunned and had to sit down to absorb the news. I was 42 at the time, what a blow, why me? I was scared and cried. I called my father and cried to him over the phone. I just knew It would kill me. We did some internet research and found my 5 year survival rate was somewhere around 35 percent..not good. Surgery was scheduled for January 12th, 2005 at St. josephs Hospital in Atlanta. Dr Jim Libby (urologist ) and Dr. Averel Snyder (thoracic surgeon) performed the surgery.
January 12th, 2005…I was scared shitless. My whole family had flown in for the surgery. I received the annointment of the sick by a priest and cried like a baby. I got a shot of something in my butt and don’t remember much after that. I had to be put on full cardiac bypass in order to get the vena cava thrombus removed, so the chest got split open. In a nutshell the surgery went well, I was out of the hospital 5 days later, back home in time for the NFL Playoffs.
Pathology revealed Stage T3c grade 2 clear cell RCC. Not good odds for long term survival.
I was out of work for 6 weeks. In the meantime I found an Adjuvant treatment study being done at Emory University and got myself enrolled into it. It was a double blind placebo controlled study so I would not know if I got the drug or not. There were minimal side effects. I had none during 6 months of once a week infusions.
February 2006…I was notified by email of suspected recurrences in my abdomen and left adrenal gland by the doctor at Emory. I asked for treatment recommendations and they were very slow to respond to me. I immediatley started calling other cancer centers and doctors who were known to be RCC experts. I ended up getting a quick appointment in Houston with Dr. Robert Amato. We flew out and met with him. He did all his own scans and confirmed two lesions one in the abdomen and one on the left adrenal. Dr. Amato convinced me to enter into one of his studies involving dose escalated Sorafenib (nexavar) as part of a road map that he would create to keep me alive.
March 2006…I started the trial with the Sorafenib, had severe side effects involving skin rash, diahrrea and hair loss. But by the end of May there was no cancer visible, I had a complete response. I continued on the drug but could only tolerate the highest dose for 6 weeks. I was down to about 148 pounds and looked very bad. No quality of life. I continued to work but I was miserable. I pretty much insisted that we lower the dose to a level that would be tolerable but even at one pill a day I continued to have diarrhea. By November the cancer had returned on my left adrenal and my left back muscle. Dr. Amato gave me the choice to go back to the higher dose of sorafenib or move on to another drug trial involving RAD001(everolimus). I opted for the RAD as it was easier to tolerate. It pretty much kept me stable.
March 2007…I was getting tired of the wait times at Dr.Amato’s and tired of being on drugs so I sought some different opinions at MD anderson, a local oncologist and the National Cancer Institute. All three opinions suggested that surgical removal of these lesions would be best at this time. I was scared to stop the drugs but made the decision to enter a surgical trial at the NCI involving gold nanoparticles and TNF (tumor necrosis factor). I stopped the RAD on May 4th and was scheduled for surgery at the NCI for June 18th 2007.
June 14th 2007…went to the NCI for admission. Scans showed the adrenal tumor had grown and the back had remained about the same. I was hoping for a partial adrenalectomy. Dr. Libutti and Dr. Wargo were to do the surgery. On sunday June 17th I received the gold/TNF injection and monitored up until surgery the next day. I had no side effects.
June 18th…surgery went well except the fact that I lost my left and only adrenal gland due to it being totally consumed by the cancer. Now I need daily steroids for life. The hospital stay was good, I was impressed with the NIH.
I went home on June 23rd and am still at home. Pretty much recovered, still sore and tight around the incisions. I plan on going back to work on July 11th. I am scheduled back at the NIH around the first week in August for scans. Hopefully I am truly NED at that time.

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