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.
KidneyCAN was founded by Ralph Knapp, Brenda Knapp, and Bryan Lewis.
Bryan Lewis’s Story
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
1962 – 2022
Virginia Beach, VA
“My kidney cancer story began on June 9, 2014, when I was told I had kidney cancer that had spread to my lungs.
Wow … not me … I’m only 53!”
At the first appointment with a local surgeon in Virginia Beach in 2014, Ralph and his wife Brenda were told he had two to three years to live. They left that appointment in shock, disbelief, and tears. Within 2 weeks, Ralph was a patient at Johns Hopkins where he had his right kidney removed and a partial lung resection.
Three months later, in September 2014, Ralph met Dr. Hans Hammers, a kidney cancer specialist and researcher at Johns Hopkins, now at UT Southwestern Dallas. Ralph’s first post-op scan revealed two cancerous nodules in his lungs. The cancer was back.
Dr. Hammers then told the Knapps about a randomized trial that involved two immunotherapy drugs which had shown success in earlier clinical trials. After weighing his options, Ralph decided to wait for the trial to open. After 5 agonizing months of no treatment, he was randomized to the standard of care drug. After six weeks, his tumors seemed to explode on this drug, and Dr. Hammers immediately put him on an off-label use drug. This drug halted the cancer progression, but it made Ralph feel terrible. While on that drug, Ralph continued to research his next treatment option. He 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.
Ralph and Brenda learned that Dr. Hammers had secured millions of dollars in drugs through BMS and was trying to get funding from various departments at Johns Hopkins. The Knapps let him know that if he needed them, they would help with funding. On June 9, 2015, (one year to the date of Ralph’s diagnosis), Dr. Hammers called and said he could use help. Within a month, more than 100 of the Knapps’ 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 Ralph.
Ralph realized his survival, as well as that of 60,000 other newly-diagnosed kidney cancer patients, depended on cutting-edge research. 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, the Knapps co-founded the Kidney Cancer Coalition, which they later merged with KCAN to form KidneyCAN. Raising funds for research and clinical trials and to accelerate cures for kidney cancer became Ralph’s hope and passion.
Ralph continued fighting cancer and fighting for research funding until his death in March of 2022. Ralph’s legacy is KidneyCAN, and his work to raise awareness and research funding has created hope and opportunity for kidney cancer patients all over the world. We hope you will read more about Ralph’s life and work.
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.