Rod Copeland (Oilseekr)
Hello. My name is Rod Copeland. I am a stereotypical kidney cancer patient/survivor. I am currently 62 years of age. My wife, Karen, and I were married in June 2008, six months before I was diagnosed with this disease. We have five sons between us all from prior marriages. She has three and I have two. All are grown and out of the nest, with the exception of Karen’s twenty-two year old, who lives with us.
I am a U.S. Navy veteran of the Vietnam era (1969-1973) and after coming home I finished my college education receiving a BBA from the University of Texas at Arlington in 1975. I worked for a CPA firm for a couple of years and then as a financial officer of a publicly traded oil company. In 1979, I started my own oil production and development company and have been in the business ever since. The oil business has always been notorious for its ups and downs, and over the past thirty-one years, I have seen those good and bad times. Some phenomenally stressful times were encountered a couple of years before my diagnosis, which I believe may have been the precursor to my developing kidney cancer.
The week of Christmas 2008 came with more anticipation than usual. Family celebrations were all planned and we were all anxious to celebrate and see our family members coming in from across the country. The week before, I had experienced some lower flank pain on the right side of my back. It was painful enough that I sought the comfort of a heating pad for a couple of evenings in my easy chair. The pain subsided and I just assumed that I had pulled a muscle. Then, on Christmas eve, I began to pass blood in my urine. I contacted my family physician and scheduled an appointment for Monday the 29th. I was told to watch for a kidney stone and to go to the emergency room at the hospital if the pain warranted such during the weekend. The amount of blood increased and was clotting in my bladder, preventing the passage of urine. After passing several large blood clots over the weekend, the blood decreased. My doctor did a physical exam, and sent me to the hospital for a CT scan.
It is a fifteen minute drive back home from the hospital, and as I walked back in the front door at my home my phone was ringing. It was the hospital calling to tell me to return for another CT scan with contrast as per my doctor’s orders. So, I returned for the scan and was told it might be a couple of days before my doctor would go over the results with me. Finally, on New Years Eve my doctor phoned. He did not mince words, and came straight to the point, saying, “Rod, I have bad news for you. You have kidney cancer.” I was doing paperwork in my office and the words seemed to echo in my mind. I had never heard of anyone with kidney cancer, and did not know anything about it. Just hearing the “C” word coming from my doctor was like being hit with a brick. I spent what seemed like an hour letting that statement soak into my mind, and thinking through it. I had to call Karen and after that I assaulted the internet to learn about my new enemy. It did not take long to see that it was going to be a war like I had never been involved in before.
My GP told me the scans showed a large tumor on my right kidney and advised me to get to a urologist as soon as possible. On January 2nd my wife and I conferred with the urologist who had already reviewed the scans with the radiologists. I was scheduled for an MRI and saw the urologist again the next day. The tumor was large and had extended into the renal vein and was on the verge of entering the inferior vena cava. The urologist told me that the only course of action at the time would be surgery to remove the tumor. I informed the urologist that I had already contacted MD Anderson Cancer Center in Houston and wanted to have any surgery and treatment done there. He was in complete agreement.
Upon my first consultation at MD Anderson, the doctors informed me that they would not give me any additional iodine contrast agent with my scans. They indicated that I had already had so much contrast that they were fearful of damage to my kidneys. At the time, this comment did not gain my attention. Later I would discover it was significant.
On February 5th 2009, my surgeon Dr. Surena Matin removed my right kidney, adrenal gland, six lymph nodes, and the tumor. Dr. Matin was receptive to my request for attempting the nephrectomy via laparoscopic surgery and this was the initial procedure. He was forced to abort the attempt as he found the tumor to be hard to access and switched to open surgery techniques in order to better facilitate the complete removal of the thrombus which had grown and extended into my inferior vena cava. Recovery from the surgery was uneventful. I was in the hospital for five days, and dismissed to return to Abilene with a large incision with staples and four “bullet holes” that would heal rapidly. There was some concern (post-surgery) relating to the reduced function of my remaining kidney. Apparently, there had been some damage that could not be known prior to surgery. My creatinine level was above 3 and it was being watched closely.
Prior to the surgery, MD Anderson doctors advised me that I would be an excellent candidate for an ongoing clinical trial called ASSURE (ECOG2805). Pre-operation scans showed that I would be considered in the high risk category for recurrence of kidney cancer after surgery. The trial was being done to ascertain the effectiveness of Sutent, Nexavar, and a placebo in a double blind study, wherein the patient would be given one of the three drugs for 54 weeks. Nine, six week cycles, would entail documenting the effectiveness of preventing the return of kidney cancer and all the side effects the drugs produced. I was eager to participate and hopeful that my participation would benefit others as well as myself.
Karen and I returned to Houston for our post-op consultation. My tumor was staged at T3b G3 N0M0. All six lymph nodes were negative for indication of cancer, and no remote metastasis could be found. Dr. Matin said all margins were negative, and he thought there was a good chance that he had “gotten all of the cancer”. Of course the usual disclaimer was then voiced, stating that no one ever knows for certain in cancer surgery.
We then went over the paperwork and I officially signed up for the clinical trial. Dr. Matin warned that the regimen would be rough physically, and to expect to be “beaten up” if I received one of the “real” drugs.
Volunteering for the trial also meant numerous six and one-half hour drives from Abilene to Houston on state highways.
On April 4th, 2009 I reported to MDA to pick up my first cycle of drugs. I began to notice some side effects within two weeks. The first SE’s were itchy skin and scalp. That was followed shortly with itching inside my ears which was particularly annoying. Beginning Cycle Two, I was experiencing diarrhea daily. At the half way point in Cycle Two, temperature sensitivity in my hands and feet had developed. This developed into “hand and foot syndrome” in the next weeks. The skin on my hands and feet began to crack and at times it was difficult to even use a fork and knife. I never got to the point that I could not walk, but there were times when my feet were extremely sore.
I began to lose hair in Cycle 3. Although I did not lose all my hair on my head, it got very thin and I opted for a burr haircut. I also lost all the hair on the rest of my body which proved to be more chilling than I had imagined during the winter months. Fatigue became a major factor with the drugs. I reached a point where I would have to stop work and nap in the afternoons. In Cycle 4, I developed some mouth sores, but found relief with a baking soda mouth wash. The mouth sores only lasted for about a month. Diarrhea became the most significant side effect. I could not venture out anywhere without toilet facilities. Six to ten episodes per day were the rule, and staying hydrated was difficult as I knew the more I drank the worse the situation could become. This also drained my energy levels and I got even more fatigued as time wore on. The hand and foot syndrome began to improve after about three cycles. It never completely left, but it became much more tolerable, and I could do most of the things with my hands that I normally did in the past. It became apparent from my side effects that my drug was Nexavar (Sorafenib). My side effects never eased up during the six week cycles. My trial nurse said if I were taking Sutent I would see some relief in some SEs during the two week period I was off the Sutent.
Every six weeks we were off to Houston for another check up and a refill of the drugs. With two cycles remaining, I began to experience some nausea with the medicine. The routine became tenuous in the last cycles. I dreaded taking the drugs knowing almost to the minute when I would be feeling bad as a result. Approaching the end of the drug portion of the trial aided my conviction, and Karen was always there supporting me and helping me with the side effects.
Throughout the trial, my remaining kidney was noted to have improved but still reduced in function. After a few months, my doctors indicated that the function was good enough that they felt I was in no immediate danger of needing dialysis.
When my doctors learned of my family’s history of cancer, I was sent to Genetic Counseling at MDA. On my father’s side of the family there were eight siblings. Six of the eight (including my father) died of some form of cancer, and the one remaining sibling currently had lung cancer. Two of my cousins from this side of the family had kidney tumors, with one of them being RCC. The genetics review entailed a complete family history with as much medical information as could be found being provided for the evaluation. Since there was such a diversification of different types of cancer within the family, it was determined there was a 95% probability that it was not genetically related.
I completed the drug portion of the clinical trial when I took my last dose on April 15, 2010. I was able to complete the regimen on full dose and never had to reduce my dosage. There were times when the hand / foot and other side effects had my clinical trial nurse and doctor telling me that all I had to do was “say the word” and they would cut the dosage. I was determined not to let that happen due to a conversation I had with another patient at MDA. A happenstance discussion revealed that he had been in the same trial. The side effects were growing heavy and his prognosis was good without participating in the trial. He opted to drop out and not suffer from the SE’s. Eight months later, his kidney cancer had metastasized to another organ. He told me that he regretted not sticking with the trial, so much. He said he would always wonder if he would be NED had he followed it through. He pleaded with me, “Whatever you do, hang in there and stick it out!” His words haunted me throughout the trial.
A few weeks after completing the clinical trial drug regimen, I experienced some significant swelling in my calves.
Phoning MDA, they had me go in to see my family GP and get some blood work and an echocardiogram. One of risk factors involved with either of the “real” drugs in the trial was potential damage to the heart’s left ventricle function. The echo came back reflecting reduced function of my left ventricle, and the report was faxed to MDA.
MDA immediately set an appointment with one of their cardiologists who specializes in heart problems related to cancer drugs. An EKG and another more sophisticated echocardiogram were done. The cardiologist examined me and advised us that there did not appear to be damage to my heart from any heart attack, but he wanted to review the new echo before making any other recommendations. Later that same week, we drove back to Houston for my scans and blood work. The cardiologist had not yet consulted with my cancer doctors, but my blood work indicated my kidney function was reduced again. The scans could not be done with contrast, and I was instructed to start seeing a nephrologist upon my return to Abilene. This is our current status.
Kidney cancer has, of course, changed my life. I think all patients would agree that the perspective of life itself is seen in a whole new light. Our faith in God, and love from (and for) others sustains our battle. Future plans are modified and what is important to us radically changes. These are normal manifestations of the diagnosis. The gift of the diagnosis is a reality takeover of your mind. It can be positive or it can be negative. Making it positive lets us live in a more enlightened mindset. To love and cherish the things we overlooked previously, is truly a blessing that we need to share with others who can learn from our experience. I am not the first, and probably won’t be the last to say that as strange as it may sound, kidney cancer has been a huge blessing in my life. The world I live in now, is just amazingly more beautiful than the world I once knew. I give thanks for that!
Whatever is in store for me is just the same as it ever was. My life is in God’s hands. It always has been.. and that’s a wonderful place to be!
I had the great fortune of finding Karen six months prior to learning I had cancer. At times, I so regret that she has to travel this road with me. It doesn’t seem fair, but God put her there for me, and I for her. Without her, I do not know how I would traverse this course. I can not imagine the battle without her. So, we will prevail together with our Lord looking over us. It’s not a fight I relish, but it is a fight I accept with the faith and conviction that can only come from our Lord.
Rod Copeland
Abilene, Texas
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