CancerGuide: Inspirational Patient Stories
It was Friday morning, September 17, 1999; I was at the Tallahassee Orthopedic Clinic to hear the results of a recent MRI and CT scan. Earlier that summer I had noticed a recurrent pain in my left hip on my daily 4 mile walk. When it culminated in severe pain on May 18 I saw my local internist who ordered an x-ray of the hip. When nothing showed he prescribed Lodine XL, a non-steroidal anti-inflammatory drug, and made me an appointment with a local orthopedist. Ten days later the orthopedic doctor ordered a different X-ray but still could find nothing wrong. He examined my movement and strength, had me continue the same drug, and said if I didn't get better to come back. I did get better on the drug, but when I discontinued it the pain came back. I thought that this might be a degenerative hip problem and the worst case scenario would be a hip replacement. When I returned to the orthopedist he reexamined my movement and strength and said, "you're much worse. We need to do some further testing." An MRI was done on September 7 followed by a CT scan on September 15. Then came the morning of September 17. The doctor was late. I was there when the doors opened at 8 am for my appointment and was a little put out by my wait. I was informed that he was at the hospital and on his way. He arrived about 9:30, made apologies for the scheduling problem and told me that the MRI and CT scan detected a growth in my right kidney and in the left pelvis area (the pubic ramus to be exact). He gave no indication that this might be cancer and seemed to indicate that there were many possibilities but he made an appointment for me to see a local urologist on the following Monday. I went home and told my wife, Carolyn, and we were both concerned but not really worried.
On Monday morning, September 20, my wife and I were sitting in the urologist's office when our world seemed to collapse. He announced that I had renal cell carcinoma (kidney cancer) which had spread to the bone in my pelvis. The prognosis was not good since radiation and chemo rarely helped and he indicated that even removal of the kidney was being questioned. It was a huge operation that did not seem to prolong survival. He said I might have two years. We were devastated.
WHO I AM
My name is Jim Ward and at the time of this kidney cancer diagnosis I was 59 years old. (I was later to learn this is the mean age for kidney cancer.) I had spent twenty-eight years as an active duty Army officer with the Corps of Engineers, retiring with the rank of Colonel. I had flown both fixed wing and helicopters during two combat tours in Vietnam. My family had lived all over the world. I had enjoyed excellent health, passing a flight physical every year. My family and I had sacrificed a lot for my career and with our two married children "out of the nest", my wife and I were retired in Tallahassee, FL. It was the only place we had lived for more than four years and we were enjoying a productive life centered around our church, friends, football games, and fishing. I was working part-time for the City of Tallahassee and at times for a local engineering firm.
FINDING A TREATMENT PLAN
I was blessed to find a young urologist who said, "if you want to fight this thing, I'll help you. You need to get to a major university or cancer center and I wouldn't take longer than a month before making a decision." As a professional soldier I knew I was in the fight of my life! I could not bear the thought of being separated from my loved ones. I had planned to take care of my wife in our golden years and to continue to provide leadership and guidance to my children and grandchildren. The first order of business was a bone biopsy the following day at a local hospital to confirm the suspected diagnosis, followed by a bone scan which showed the only "hot spot" to be the pelvic area. The urologist contacted the doctor who trained him at the University of Florida; he wanted to see me immediately. We drove to Gainesville on October l where the urologist at the Cancer Center confirmed what I had already been told. It was a grim situation! But he felt the most pressing need was to get some radiation to the hip. He arranged for me to see a radiation oncologist that afternoon. I was told the radiation was not for a cure but was palliative to stop pain and erosion of the bone. I had the option of going back to Tallahassee for radiation or doing it there at Shands Cancer Center. Since he said they could do the blocking that afternoon and begin the treatment on Monday I opted for the radiation at Shands. We went home for the weekend, packed a suitcase and my wife and I moved into the Hope Lodge on Sunday afternoon. The Hope Lodge was the first of many inspirational journeys we would take. It is a home-away-from-home for outpatient cancer patients and is sponsored by the American Cancer Society and Winn Dixie grocery stores. During that week we met the most wonderful people, some who had been battling cancer for years, many with disfiguring surgeries, and this experience pulled us out of our "pity party." Churches in Gainesville brought in meals; fraternity and sorority members played bingo and brought refreshments. We actually had a fun time except for the 45 seconds of radiation I received each day.
After a week of radiation to the hip I returned to Tallahassee with some pain relief and began an exhaustive search of available treatment for renal cell carcinoma. My wife, who had worked for doctors for years and was Internet savvy, got to work. This really energized her. She would print what she found on the web and take it to the urologist who would then make appropriate phone calls. We networked with everyone, including a doctor in the family and doctor friends. We received information for the trials at NCI. Then one night our daughter called from West Palm Beach all excited about a story she had seen on the local TV about a promising vaccine trial for kidney cancer somewhere. The somewhere turned out to be Moffitt Cancer Center in Tampa. About that same time my wife's sister, who lives in the Tampa area, had called Moffitt to talk to them about treatment options and she too, heard about the trial. Then my wife discovered it in her Internet research. I mailed all my medical records, test results and pathology slides to Moffitt and set up an appointment to talk to them. On the 12th of October we met with several doctors who had already decided I was such a good candidate that they had penciled me in on the surgery schedule two days later to have my kidney removed. It seems that most 59 year old males have a host of other medical problems, like high blood pressure, heart disease, diabetes, etc. and here I was a picture of health except for one minor problem - kidney cancer. They like healthy subjects for their trials! I said, "not so fast, we're still researching and we may be back, or we may not." I still had a scheduled appointment with an oncologist at the University of Florida. I kept that appointment and he informed me they had no trials currently, only standard treatment. He looked through the information we had gathered and said if I wanted to do a trial the one at Moffitt was as good as I'd find anywhere. Then it was back to Tallahassee and a consultation with my urologist who came to the same conclusion, not knowing what the doctor at UF had said. He also pointed out the consideration of it being close to home (4 1/2 hrs) and the support we would need from family and friends as opposed to going a great distance and living in a motel for weeks at a time. So my decision was made. It was time to start the trial.
TUMOR CELL VACCINE AIMED AT KIDNEY CANCER
The following is quoted directly from Dr. Scott Antonia, my doctor at Moffitt, "all of the components for your own immune system to reject kidney cancer are there, but in some people the immune system doesn't kick in to stop the cancer from growing. So the question is, is there anything that we can do to try to make that happen? In our clinical trials, we are focusing on modifying a tumor cell so that it activates the body's killer T cells to recognize the foreign tumor and kill it. We have created a vaccine production facility to produce the vaccine from patient tumors. The laboratory staff takes a sample of the patient's tumor, grows cells from it and then inserts a gene into the tumor cells that is designed to send signals to activate killer T cells to attack the cancer. Those gene- modified tumor cells function as a vaccine, which is injected into the patient three to six times over a three-month period. Patients also are given Interleukin-2, a cytokine that acts as a growth factor for T cells. The vaccine follows the surgical removal of the tumor, which is the standard course of treatment for a kidney cancer - an often fatal disease with limited treatment options. A recently completed phase l trial (I was one of 15 people in this trial) has shown that there is no toxicity associated with the vaccine." A phase II trial is now underway.
On October 28 I had my right kidney removed; the recovery was much quicker than I expected with very little pain. Before the surgery I was told I might be in the hospital for 10 days, but on November l I returned to Tallahassee. My recovery went well and in a few weeks I got the phone call I had been waiting for. I had grown 9 vaccines and 6 were all that was necessary for the trial! I received my vaccine at two-week intervals with no side effects, then halfway through the vaccine, I began the daily injections of IL-2. It was as bad as everyone had predicted, but I continued to work through the six weeks, receiving my injection in Tallahassee at a local hospital every weekday at 2:30. Then I would go home and prepare for the side effects, which usually kicked in about 6 and lasted until midnight. I would get up the next morning and go to work and then begin again the next day. The best I ever felt was on Monday morning and oh how I dreaded those Monday nights! The local VA clinic agreed to do my required weekly labs which I faxed to Moffitt. This eliminated some of my trips to Tampa, but I had to go every two weeks for vaccine injections. I completed my treatment on February 21, 2000 and had a major response. The metastasis to the pubic ramus had decreased in size by 70% and my disease was stable.
I continued to be in remission for the remainder of 2000, going to Moffitt every 3 months for scans. Then on January 2, 2001 the pain returned to the hip and I knew the cancer was back. At my regularly scheduled checkup on January 17, the CT scans confirmed what I already knew. The battle was back.
That same day I had full body CT and bone scans which showed no new metastasis, only that stubborn one in the pubic ramus that refused to go away. So an orthopedic surgeon who was Chief of Sarcoma was consulted. Since it was a single metastasis he felt he could cut the bone and mass out and I was still looking at a good chance of survival but I would have some disability. On February 6, 2001 I underwent a hemipelvectomy (removal of part of half the pelvis), reconstruction and total hip replacement. It was a huge surgery and I was left with no use of my left leg at all. I spent two weeks in the hospital and then was transferred to a rehab hospital in Tallahassee to regain the use of that leg. I spent a week as an inpatient and 6 weeks as an outpatient and have continued daily rehab exercises at a local gym. I can now walk with only a slight limp and no cane. My Orthopedic surgeon told me I'm doing better than he expected. On a positive note, the pathology report of the resection showed densely infiltrated T cells. The vaccine was working! To further enhance the chances for a cure, the Tumor Board at Moffitt, decided I should undergo 6 weeks of radiation to the hip in Tallahassee. The surgery and radiation have given me an unexpected side effect with swelling in the left hip and thigh. I'm told I will "just have to live with it." I did some lymphatic drainage massage treatments and now wear a custom-made Jobst compression garment.
Once again my 3 month scans showed no cancer until November 2001 when a CT scan showed a suspicious area again in the hip and several small nodes in the lungs. Fine needle biopsies were done on the hip and all came back as scar tissue. January 16, 2002 a PET scan was negative for the nodes in the lungs but the CT scan showed them still there but apparently stable. My physical exam was excellent and I have no symptoms of any disease. I return again in April for more scans. A sign at Moffitt says, "the challenge of cancer is living with hope and coping with the uncertainty." I think that says it all, so right now I am coping.
I am a Christian and it is the prayers of God's people, my family, and my church family who have given me such a peace as I've battled this horrible disease. I am thankful for the Lord who has my best interest at heart. He purchased me with the sacrifice of his own son before I ever was. Now, his ways are not my ways, therefore I may not understand "why" until he explains it to me. Perhaps it is to touch someone to take a step forward toward Jesus. Perhaps it is to be on the cutting edge of a cure for renal cell carcinoma. By participating in a clinical trial I may help someone else, even if I am not helped myself. I went from what I thought was a little problem one Friday to incurable cancer on Monday. Thank goodness the Lord was there with me and continues to walk by my side.
UPDATE: JANUARY 2003
During 2002 my doctor at Moffitt continued to watch the lung nodes with CT scans every three months. Because of the very slow growth, and allowing for slicing error, he considered it to be "stable" disease. We think this could be attributable to the vaccine therapy but of course have no way of knowing for sure. Systemic treatment options were discussed but because of the low probably of success and the extreme side effects we decided to forego this avenue. I continue to feel very good and function very well, working and exercising on a daily basis. At our visit in January 2003 I was offered an opportunity to participate in a new clinical trial with a different vaccine approach using GM-CSF and CD40Ligand along with my tumor cells. The trial is awaiting final FDA approval and is expected to begin by mid-February 2003. The doctor thinks that it's fortunate that I have developed a couple of subcutaneous nodules in the groin area that he suspects are RCC and can be easily ressected for fresh cells rather than using the original frozen ones. As I continue this uncertain path I will keep you informed of the journey.
UPDATE: JANUARY 2004
I'm still alive, doing fairly well and beginning my 5th year of living with RCC. In March 2003 I had the three groin mets recmoved and they were RCC. The plan was to use them as fresh tumor for the new vaccine trial I wrote of in the 2003 update. However they became contaminated in the removal process. Fortunately I had cells still frozen from my original tumor. I began the vaccine trial in April and finished in August. My scans in September showed continued growth in the numerous lung mets, so I was out of the trial. It was decided I was in good enough health at that time to try high dose IL-2. That turned out to be unsuccessful also. Because of my normal low blood pressure I got into fluid retention difficulties almost immediately. I was able to receive 5 doses before I developed ARDS (acute respiratory distress syndrome) and ended up on a ventilator. It was a very precarious time and for a few days my survival was in question. But I survived and was given a few months to recuperate. The next approach was to do two rounds of Xeloda and then rescan. I tolerated the Xeloda with few side effects and scans last week showed no growth in the lung mets. I am now on two more rounds of Xeloda while I wait on a new clinical trial awaiting FDA approval. It will be Avastin and low dose IL-2. I am not thrilled at the thought of more IL-2 but then I'm still in the fight!
UPDATE: SEPTEMBER 2005
Due to the long illness and death of Steve Dunn, Jim Ward’s story has not been updated for some time. As Jim’s wife Carolyn I am writing the rest of the story as Jim died on February 12 of this year after a 5 and and a half year battle with RCC. When the last submission was written Jim was awaiting a trial of Avastin and low-dose IL2 but it was never approved before his death. He chose to do another trial of a Japanese drug called YM-155 but after two rounds of this drug it showed no effect on the lung mets. While in the hospital for infusion of this drug a disease he had contracted while on active duty in the military called Sarcoidosis became active and he was placed on oxygen and Prednisone. His pleural cavity began to fill with fluid and a thoracentesis was done on his right lung in July, but it was negative for cancer. In December a thoracentesis was done on the left lung and there were cancer cells present. Still on Prednisone and oxygen in January a chest x-ray showed the lung refilling so he was admitted to Moffitt Cancer Center for a “bedside” pleuradesis. That worked for a little while but the fluid came back. The second time the doctors did a pleuradesis with the talc powder and it appeared successful however he struggled to breath even though on oxygen. On February 10 he was in such distress we had to call 911 and he was taken to the emergency room. He came home the same day and told me, our daughter and son he couldn’t fight any longer and he was ready to go home and be with Jesus. He asked us to call Hospice and our pastor. They delivered a bed and the next day he told us all goodbye and closed his eyes and he was gone. It was very peaceful and his struggle was over.
On February 15 we had a celebration of his life at our church and on February 16, his 65th birthday, he was laid to rest with full military honors at the Florida National Cemetery. Engraved on his headstone are the words, “Another Soldier, Coming Home” the words from a song sung at his service. Six months after his death the VA declared it service connected due to the complications from the Sarcoidosis.
If you'd like to write, Carolyn can be emailed at: [email protected]
This CancerGuide Page By Jim Ward. © Jim Ward
Last Updated: January 25, 2003