KidneyCAN is a patient-created and patient-driven movement, drawing energy and motivation from people all over the United States and the world whose lives are impacted by kidney cancer.
We are a grassroots organization created by people whose lives have been directly impacted by kidney cancer. Our members are patients, caregivers, and volunteers who bring passion and personal motivation to the cause.
The three co-founders of KidneyCAN are Bryan Lewis, Ralph Knapp, and Brenda Knapp.
Bryan Lewis’s Story
I was diagnosed with kidney cancer in the summer of 2007, when I was just 46 years old. At the time, I was the new father of one-year old twins and had recently been promoted at a leading national trade association. My family and I had just returned from vacationing in the Rocky Mountains in Colorado.
In July 2007, I noticed blood in my urine while at work and thought it may be from one of the juices I had at a meeting. The cranberry color continued throughout the day. That evening, I went to the local emergency room where they believed I had kidney stones. To be safe, the doctor recommended a CT scan. The CT scan showed a tumor, likely to be cancer, and I was asked to return to the urology department the next day. When trying to re-create the moments and minutes after hearing that statement, I admit that my memory is sometimes crystal clear and then other times it blurs: “Cancer. I’m sorry, did you just say CANCER?” There is no history of cancer on either side of my family. My grandfather lived to be almost 101 and my parents are both active and in their 90s.
Ground zero. My journey begins. But in reality, the journey for cancer patients involves many others: spouses, children, extended family, friends, neighbors, medical staff, and fellow patients. Upon returning to the urology department after a sleepless night, the doctor informs me that I need surgery immediately, and I’m scheduled for a radical nephrectomy. The surgery was a success. However, during surgery, metastatic disease was found in the surrounding lymph nodes and going up towards the chest and thoracic area. My optimal course of treatment was to consider taking Sunitinib to help keep the tumors in check and stop them from growing and spreading. I was informed I could (and should) get a second opinion. After searching the Internet (which can be frightening for the uneducated oncology patient), I went to see kidney cancer specialists in Philadelphia and New York. Both agreed Sunitinib was my best bet; however, the histology of my tumor was interesting. It appeared to have both clear cell and papillary characteristics. The US National Institutes of Health (NIH) was interested in the histology and agreed to take a look at my cell slides and come in for further analysis. Most of the NIH oncologists agreed on the side of Sunitinib, but one doctor made the case for surgery due to my age and overall good health. My wife and I decided to try surgery. After 13 hours on the operating table, a week in the intensive care, and several weeks in recovery, I went for my 3-month scans and got the all clear. Months later, there was no evidence of disease (NED). Now, more than a dozen years later, I have annual scans and still NED.
Early in my journey, one doctor shared some poignant advice: “Remember this; we are in the practice of medicine. We do not know everything.”
My advice: Take charge of your own situation. Take copious notes of every meeting and appointment. Ask questions. Get answers. Seek out multiple opinions. Find kidney cancer specialists. There are dozens of types of cancers. Changes and breakthroughs are happening daily in oncology. Many doctors, even the best, cannot read up on everything going on in the cancer universe. Urologic oncologists are focused in this area. Search. Study. Ask. Join a patient group. Join Smart Patients. Talk to your doctors and nurses. Get involved. Only you can take charge of your situation.
A couple of years ago, a good friend of mine said, “After all you have been through, you need to give back.” That was the spark to support Kidney Cancer advocacy and work towards a cure. I want to thank God and also share a sincere thank you to my wife, my family, and friends who have prayed for me and supported me during this time. I could not have done it without them.
Ralph Knapp’s Story
Virginia Beach, VA
Wow … not me … I’m only 53!
At the first appointment with a local surgeon in Virginia Beach, my wife Brenda and I were told I had two to three years to live. We left that appointment in shock, disbelief, and tears. Within 2 weeks, through divine intervention, I was a patient at Johns Hopkins. I had my right kidney removed and a partial lung resection.
Three months later, in September 2014, I met my current oncologist, Dr. Hans Hammers, a kidney cancer specialist and researcher at Johns Hopkins, now at UT Southwestern Dallas. My first post-op scan revealed two cancerous nodules in my lungs. I’ll never forget his words — “The cancer is back” — in his thick German accent. Once again, we were left in shock and sadness.
Dr. Hammers then told us about a randomized trial that involved two immunotherapy drugs which had shown success in earlier clinical trials. After weighing my options, I decided to wait for the trial to open. After 5 agonizing months of no treatment, I was randomized to the standard of care drug. After six weeks, my tumors seemed to explode on this drug, and Dr. Hammers immediately put me on an off-label use drug. This drug halted the cancer progression, but it made me feel terrible.
While on this drug, I continued to research my next treatment option. I read a blog on Smart Patients about a new trial Dr. Hammers wanted to start at Johns Hopkins with the same immunotherapy drugs plus high dose radiation. However, he needed funding to make this study happen.
We learned that Dr. Hammers had secured millions ofdollars in drugs through BMS and was trying to get funding from various departments at Johns Hopkins. We let him know that if he needed us, we would help with funding. On June 9, 2015, (one year to the date of my diagnosis), Dr. Hammers called and said he could use our help. Within a month, more than 100 of our friends, family, and business associates came together and raised $300,000 for the RADAX clinical trial. This made treatment through a clinical trial possible for 25 advanced kidney cancer patients, including me.
My personal journey continues as I fight this cancer. I am currently in my 4th clinical trial at NIH (National Institutes of Health).
I have come to realize my survival rate as well as 60,000 other newly diagnosed kidney cancer patients depends on cutting edge research. The doctors and researchers are doing their part, but they need funding!
After a thorough search for a private funding vehicle for kidney cancer research, it was obvious there was a need for a national nonprofit to fund kidney cancer research. In July 2016, my wife and I co-founded the Kidney Cancer Coalition, which we later merged with KCAN to form KidneyCAN.
This has become my hope and my passion: to raise funds for research and clinical trials and to accelerate cures for kidney cancer.
Merlinda Chelette’s Story
1963 – 2019
KidneyCAN – Director
Merlinda was an exceptional woman and a devoted follower of Jesus. Her love for her Savior and for people was evidenced in the way she conducted her life. She served people wherever she encountered them. From family and friends to strangers, she wanted others to know God’s love and care for them.
In her over 25 years as a nurse, she worked in Louisiana as an ICU nurse and as an organ procurement coordinator for LOPA. She also worked in Texas as an ICU and ER nurse. Additionally, she served as a Sunday School teacher for 2-3-year olds and was a part of a women’s mission group. She tirelessly supported her husband as Executive Director of Living Hope Ministries and eagerly loved the individuals that the ministry reached. Her beauty, elegance, and affable demeanor drew people to her with unbridled affection while her uncompromising belief in God’s truth often challenged them to a higher call and a greater good.
As she battled with cancer, her efforts became more focused on others in a similar situation. She stated, “I don’t want to waste this pain. I want to make a difference for God’s glory.” Her vast knowledge and experience in medicine made her the perfect patient advocate, often explaining difficult processes and options in ways patients could sense empathy and gain understanding. She also dedicated herself to funding research for kidney cancer, a significantly underfunded field of oncological research. With the help of friends and colleagues, she established the first and now annual Kidney Cancer Gala in Dallas, established the UT Southwestern Kidney Cancer Golf Tournament, and advocated for the establishment of the first Chaplaincy program to assist kidney cancer patients at UTSW.
Merlinda’s efforts raised hundreds of thousands of dollars for research at the UT Southwestern Kidney Cancer Program. She continues to influence and inspire the work we do today.
KidneyCAN is a registered 501(c)(3) nonprofit and does not receive any funding through the Congressionally Directed Medical Research Programs (CDMRP) or KCRP (Kidney Cancer Research Program). Our work is funded by grassroots donors in the kidney cancer community.