Apr 17, 2013 - 3:15 pm
First a little background on myself. I am a 48 year old male and was diagnosed with stage IV RCC September 2012. I went to the orthopedist in August 2012 because I thought I had injured my shoulder while working on my sons car. The orthopedist said it wasn't an injury and sent me for further test. Dozens of xrays, scans and MRIs later it was decided I had RCC. I had a large mass (10 x 9 cm) in my right kidney and it had grown into the vena cava. I also had a tumor on the left scapula, multiple (too many to count) nodules in both lungs and a met to the T9 vertebrea. I began radiation on my shoulder and spine and was then suppose to begin Sutent. During our first meeting with our local oncologist, when asked what my prognosis was, my local oncologist said "we aren't to that point yet" and gave none. In October I obtained the notes from the initial visit and they stated he had told me I had 6-10 months left. The doctor had not told us this and my wife hit the roof and demanded I go somewhere else. By the end of October I was at M.D. Anderson in Houston for treatment. My oncologist in Houston, Dr. Corn, said I was young and healthy and he could do something for me. On November 5, 2012 I began taking 400 mg of Votrient and by 12/1/12 I had worked up to 800 mg. The side effects were not unbearable and I continued to work. In addition to Votrient I was also given Zometa every 30-60 days. The Zometa side effects were worse than the Votrient side effects. I have continued to work every day since finding out about the cancer and I am determined to remain positive.
At a follow-up appointment on 1/3/13 the scans noted the kidney and scapula masses had decreased and were showing signs of "rotting" and the lung nodules were decreasing in size with some actually disappearing. Dr. Corn was very happy. At another follow-up on 3/4/13 scans continued to show signs the Votrient was working and the decision was made to remove my right kidney. On 3/7/13 I had a radical nephrectomy. The kidney, lymph nodes and part of the vena cava was removed. Pathology on the kidney indicated the tumor had shrunk to 7.4 x 7 cm and noted "extensive therapy effects". Dr. Corn was super excited. I spent 4 weeks in Houston recovering and then returned home. I am now back on the Votrient and it seems to be working again, at least my body feels as though it is working.
I would like to hear from others who have been diagnosed with stage IV RCC. How are you dealing with it, what treatment are you receiving and what have you found that works the best. I would also like to hear from those on Votrient and Zometa. What side effects have you experienced? How is it working for you? For those who have had a nephrectomy I would like to hear how your recovery went. Any information anyone can provide on fighting and surviving this dreaded monster will be really appreciated. My wife and I are in this fight to win and we want to hear from others, especially those who are fighting and winning.