It is sad when we lose fellow warriors diagnosed with metastatic RCC. I thought I would share my story to offer some encouragement.
Nine years ago today I lost my left kidney to Stage 3 RCC. My tumor was the size of a small pumpkin! After surgery, I enrolled in a clinical trial for adjuvant Votrient. I was devastated when I got the diagnosis of metastatic RCC to my lungs two years later.
After an unsuccessful lung surgery my wonderful oncologist Dr. Motzer at Memorial Sloan Kettering in NY put me in a clinical trial for immunotherapy with Opdivo and Yervoy.
I was only able to tolerate four infusions before I had to drop out of the trial, as my immune system started attacking my healthy organs. I was in ICU for weeks, in liver failure, and became a type 1 diabetic because my pancreas also failed. After putting me on anti-organ rejection drugs and massive steroid doses I slowly recovered. The good news is that with those four doses I have remained NED!
When I was first diagnosed there weren’t any drugs for RCC. In nine years there are many treatments available with new drugs coming out every day!
Since then I have extensively traveled, visited many different countries, met the love of my life, and was married for the first time at 60!
The whole point of my story is that you never know what tomorrow will bring, so never give up. You will face many ups and downs, have good days and bad days, but never lose hope!
Believe in your doctors, ask lots of questions, do your research, rely on family and friends, and the members in your KCCure facebook groups for any questions you have. Others in these groups have an impressive number of years as survivors, and I would like to encourage them to also share their stories as it gives others encouragement.
Stay strong, and keep fighting!
