Written By: Piret Tate
Kidney Cancer Warriors Support Group Member
piret on KCA forums
My husband, Ken, grew up on a farm in Snyder, Texas. When he was 12, he became very ill. He spent a week in the hospital before his dad took him to a hospital in another city where he was diagnosed with a ruptured appendix. He had emergency surgery and recovered. At age 12, he also developed migraine headaches. The cause was diagnosed 9 years later as being onions. To this day, as long as he stays away from onions and onion products, he is fine. As he grew older, he played basketball in high school and took jobs working on cars and on oil rigs.
In 1981, Ken moved to Huntsville, Texas, to work as a prison guard and to attend classes at Sam Houston State University. In December 1981, he met me, his wife Piret. We married in 1984. Ken had moved to Austin, Texas, the year before so that he could attend the University of Texas. While attending classes, he worked for an armored car company and also did car repairs on the side. He graduated from UT in 1988 with a degree in Geography.
A few years later, when he was not able to find a job related to his degree, he decided to go back to car repair. He started a mobile auto repair business. In the late 90's, when traffic in Austin started getting worse, Ken opened a repair shop. During the 90's, Ken had another emergency abdominal surgery which was attributed to adhesions (scar tissue) and he also had a bout with kidney stones.
On Super Bowl Sunday in 2006, we spent a quiet day at home. Ken had been complaining for weeks about being tired all of the time and about his back hurting. We had returned from a trip to San Francisco the week before, where he said he felt better. He was only 44 but worked long hours in his shop standing on concrete all day. You attribute it to age and burn-out. So, on Super Bowl Sunday, we watched the game and some TV afterwards. I brought Ken a snack during the 10 p.m. news and went back into the kitchen to finish cleaning up. I was talking to Ken but noticed he didn't answer back. I peeked into the living room and saw he was no longer sitting in his recliner. I figured he had gone to the bedroom. I called out his name but he did not answer. I walked onto the living room and saw he was kneeling on the floor with his face in the sofa. At first, I though he was playing a joke; but when I lifted his shoulder, it was dead weight. I then brought him up and swiped his mouth thinking he choked on his snack. I shook him and he came to. I sat him against a chair where he was sweating profusely. I called 911, put our 4 dogs into a bedroom, and waited for the ambulance to show up.
As I followed the ambulance, I thought he had had a heart attack. He didn't eat well: he ate hamburgers and french fries for lunch almost every day or chicken fried steak and he drank a lot of cokes. He finally got to a room around 4 am so I went home to get a few hours sleep. The urologist was in the room when I arrived later that morning. The urologist said Ken had a pulmonary embolism and that's what it caused him to stop breathing. My shaking him broke it up. They also found a 15 cm tumor on his right kidney. Cancer? Most likely, yes. There may be a clinical trial you can consider.
He spent the week in the hospital to get his PEs (pumlonary embolisms) under control. Twice that week, he was told by different doctors that there wasn't much hope and there was really no point in having the tumor removed because he was a dead man anyway. Fortunately, Ken also saw an oncologist who became furious at what the other doctors said. We made a rule that only his oncologist could talk about cancer and treatment options, which at that time was only Interferon and Interleukin.
Ken was discharged with his nephrectomy scheduled for the end of February. While at home, he spoke with his cousin, who works at Hermann Hospital in Houston. She insisted Ken come to MD Anderson to talk with a doctor there, which he did. When we met with Dr. Wood (at MD Anderson in Houston), he explained that anyone can take a kidney out, but the most important thing when you have cancer, is that there is a plan in place for care after the surgery. In Austin, there was no plan, so Ken decided to have the surgery at MDA.
The surgery was scheduled for the same day as his Austin surgery. It took a little over 3 hours. When Dr. Wood came out to speak with me, he said he removed a big kidney, holding his hands to show it was about the size of a personal watermelon. Pathology showed it was clear cell Stage 3, Grade 4. The tumor invaded his renal vein and into the vena cava. There was no evidence of metastasis at the time. Ken was in so much pain that first night. By the next morning, they had moved him into his room and he was up walking later that day. He remained in pain but got up to walk regularly. He was in the hospital for 9 days because the doctor wanted his blood thinner regulated before he left.
Ken went for scans every 3 months. The clots in his lungs remained of concern because there was suspicion that they broke off from the tumor and could grow. In June of 2007, they showed signs of shrinkage and Ken was bumped to check-ups every 4 months. October 2007 scans showed his cancer had returned into his lymph nodes around his lungs and windpipe. He had a biopsy to confirm it. Dr. Wood always had a strange sense of humor. When he broke the news to Ken, he said, "Now don't go buy a cemetery plot just yet. We're not done with you." Ken then moved over from the surgical side of the genitourinary section to the medical oncologists side.
He was assigned to Dr. Tannir, who we liked instantly. Sutent was the new wonder drug, which Ken started on. Scans while on Sutent showed disease progression, so he was switched to Nexavar. Nexavar didn't do anything for him either so Ken signed up for the ABT-869 clinical trial. During his first check-up on this, the scans showed stable with slight shrinkage. It was making him feel badly though. A few weeks later (June 2008), Ken started coughing up blood. A lot of it. I drove him to the ER. The ER doctor asked if Ken had his affairs in order. Ken asked him if he wasn't going to be walking out of the hospital. I was furious! Turned out the ABT-869 caused his lungs to bleed. He had a procedure to stop the bleeding, was sent home a couple of days later, and was no longer in the trial.
I should mention that this whole time, Ken has a wonderful oncologist here in Austin who takes care of him locally, Dr. Carlos Rubin de Celis. Dr. Tannier and he communicate with each other when needed. It feels really good to have the medical team we have.
The next treatment was another clinical trial - Decitabine and Interferon. Ken received the Decitabine for the first 5 days of every 28 day cycle. It required us to spend a week in Houston each month. After 3 months, scans showed that it did not work as Ken had disease progression. The next step was to try Torisel. Ken had good success with it. Shrinkage or stable with scans every 2 months. During this time, Ken decided to close his business. The torisel caused him to be forgetful and foggy, and he was not working every day because some days he was not physically able to. He started on disability in May 2009. Fortunately, he was approved the first time and did not have any difficulty with the approval process.
Afinitor became FDA approved during 2009 and Ken started on that mainly because of the convenience. Taking a pill every day seemed easier than going for IV infusions and Ken's thinking was that it would stay in his system more consistently. The Afinitor alone did not help so Avastin was added. Ken had over 40% shrinkage after starting on the Avastin / Afinitor combo. He remains on that today.
Ken developed a hernia from his nephrectomy incision. It grew quite large and caused him intestinal distress. He had it repaired here in Austin in June. He had to go off the Avastin for 2 months, but scans on July 7, 2010, showed stable disease.
During this time, Ken has also changed many aspects of his life. He avoids stress and negative people. He has been a vegetarian for a year now, eating organic, when possible. He also drinks 3 cups of white tea a day, a glass of pomegranate juice and a mixture of garlic, ginger and turmeric. He also tries to sit in the sun for 15 minutes each day to get his vitamin D.
When first diagnosed, we thought cancer was an automatic death sentence, but Dr. Tannir reminds us that it is to be thought of as a chronic disease. It something he'll always have, but we have to keep it under control
Ken is no longer with us here on earth. He won his battle against kidney cancer and will live on forever in the hearts of those who knew and loved him!
Ken Tate
Austin, Texas
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