Written By: Bobby Kidd
aka robertak on KCA forums and KCW/Chat
In July 2006, Doug and I went to Gatlinburg, TN with some friends for a long weekend. While there, he turned 65 and Medicare kicked in! From there we drove to St. Louis to visit family. Several days after our return, Doug experienced severe pain in his right kidney. We went to the emergency room where he began vomiting from the pain. They did a CT Scan thinking kidney stones or a blockage in one of his stints. Good news was no blockage in the stints, bad news several “growths” in the kidney.
The next day we went to a kidney specialist, more tests and Doug was diagnosed with kidney cancer. He had the kidney removed on August 10, 2006 and THEY GOT IT ALL! We were told we didn’t need to see an oncologist because “they got it all”.
Doug wanted to have CT scans every 6 months just in case. In the CT Scan in Sept 2007 they saw some spots on the left lung, but thought it may be an infection since Doug also has COPD. They retested him in Dec 2007 and that is when we knew his RCC had spread and we went to an oncologist for the first time. His oncologist reviewed everything from the beginning and found out the pathologist had made a mistake originally saying it was stage 1B. It was really stage 3B. It is, however, Furman Grade 2.
They did a needle biopsy on his lung, it collapsed, time in hospital. More time in hospital while they removed one of the tumors from his lung.
Doug started Sutent in Feb 2008. He took it successfully until Nov 2008 and then tumors in the lung started to grow. In January 2009 he began a trial on RAD-001 (Afinitor). By Mar 2009, he was in the hospital with every side effect imaginable. At that time Doug decided to go off all therapy. His oncologist called in Hospice. Doug was down to 115 lbs, on oxygen, couldn’t get out of bed and couldn’t eat.
Hospice came faithfully through the spring and summer as Doug’s health improved. We took trips and visited family. Our oncologist kept track of him through Hospice and occasional lung x-rays.
In August 2009, Hospice, the oncologist and Doug and I, decided it was time to start treatment again. His lung tumors had tripled in size, but Doug was very healthy. He was up to 150 lbs and off oxygen. Life was good.
We have a Cancer trial facility here in Greenville and they asked Doug to participate in a trial for Pazopanib and its affect on the heart. That drug has now been approved as Votrient for RCC, but Doug still gets it through the trial. His tumors shrunk by 45% in the 1st 3 months and have remained stable since then. We just returned from a 2 week trip to Costa Rica and Panama. He remains healthy. He has learned how to control the diarrhea and the fatigue comes and goes. The taste issues also pop up, but he loves to cook and when I see him printing out more recipes from the cooking channel, I know his taste is returning!
Knowing what I know now ….. after 4 years of RCC, I would do things differently. I would go to an oncologist as soon as they said “kidney cancer”. I would let an RCC oncologist direct his treatment from the beginning. We have had all treatment and trials here in Greenville and I wouldn’t change that. The care has been excellent and his care team loves him. That is so important.
Doug has never had a brain scan or PET scan. That is the thing with being on Medicare, they don’t do a test until you have a symptom. The only tumors we know about are the lung tumors and his CT scans don’t show any others, so we assume they aren’t there.
Having cancer is not easy, and learning to “live” with cancer takes time. Another RCC caregiver told me they were waiting for her husband to get “better”. I know Doug will always have RCC, so learning to live “better” with it has been our challenge. Now we can have arguments and I don’t think “Oh I can’t say that, he might die”. We live life relatively normally within the confines of RCC and it is GOOD.
Doug is no longer with us here on earth. He won his battle against kidney cancer. He will live on forever in the hearts of those who knew and loved him.
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