Bryan Lewis’ Story

KC Coalition – President

Philadelphia, PA

By: Bryan Lewis, President KC Coalition
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.
Here is my story …
In July 2007, I noticed blood in my urine while at work and thought it maybe 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 recreate 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 90’s.
Ground zero; my journey begins. But in reality the journey involves many others: spouses, children, extended family, friends, neighbors, medical staff, fellow patients etc. 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, 11 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.
– Bryan Lewis

Ralph Knapp’s Story

KC Coalition – Director

Virginia Beach, VA

By: Ralph Knapp, Co-founder KC Coalition

My story began June 9, 2014, the day I was told I had cancer…..kidney cancer and that it had spread to my lungs. Wow…not me…I’m only 53!

The first appointment with a local surgeon in Virginia Beach, my wife Brenda and I were told I had 2 to 3 years, we left that appointment in shock, disbelief and tears. Within 2 weeks, thru divine intervention, I was a patient at Johns Hopkins and had my right kidney removed and a partial lung resection.

Three months later, September 2014 my story begins with my 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 “Cancer is back” in his thick German accent. Once again, shock and sadness.

He 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 he immediately put me on an off-label use drug.This drug halted the cancer progression, but 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…but he needed funding!!

We learned Dr. Hammers had secured millions of drugs through BMS and was trying to get funding from various departments at JH. We let him know that if he needed us, we would help. On June 9, 2015 (1 year to the date of my diagnosis) Hans called and said he could use our help. Within a month, 103 of my friends, family and business associates came together and contributed $300,000 for the RADAX clinical trial for 25 advanced kidney cancer patients!!

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. These efforts 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 non-profit to fund kidney cancer research.  In July 2016, my wife and I co-founded Kidney Cancer Coalition.  Since 2016, the KC Coalition has put over $600,000 in the hands of researchers.

This has become my hope and my passion to raise funds for research, clinical trials and find a cure for Kidney Cancer.

– Ralph Knapp

Merlinda Chelette’s Story

KC Coalition – Director

Dallas, TX

By Merlinda Chelette

August 2012, I learned I had Stage IV Renal Cell Carcinoma (Kidney Cancer). For several months I had been experiencing low back pain.  Thinking that I had pulled a muscle while working as an ER Nurse, I ignored this pain.  Finally the pain became too intense and I sought medical care. A CT scan revealed I had a tumor in my right kidney with a metastatic lesion to my 2nd lumbar vertebrae. I immediately thought “Hey God, it’s me”.

As my husband and I drove home with the news of cancer, I looked at my wonderful husband of 24 years realizing all our dreams of growing old together had vanished. My future looked bleak and my dreams were shattered. When I asked my husband “what are we going to do?” He immediately responded “We are going to trust God. He will see us through. He has never left us nor forsaken us. He is the same yesterday and today and forever.” Amen.

God indeed has been faithful these last 4 years. He has seen me through two back surgeries, one kidney removal surgery and three rounds of high dose radiation.

When I came to UTSW to participate in a clinical trial, I met Dr. Brugarolas and a fellow kidney cancer patient, Tony. Both encouraged me to participate as a volunteer and be a member of the patient council. Through my volunteering at UTSW, I was able to meet other Stage IV kidney cancer patients. My eyes were opened to the fact that some patients do not respond to current therapies and die within 20 months. I suddenly realized that I was unusually blessed to be a 4 year survivor of Stage IV kidney cancer.

After the loss of a dear man in his thirties, I became energized with the desire to help raise funds and awareness for kidney cancer research. We are losing too many men, women and children to this dreadful disease. I ask you to join us!  Research Saves Lives!

“Alone we can do little but together we can do much!”

– Merlinda Chelette

“Kidney cancer is the ideal sandbox for these new approaches, and without a doubt the same approach can, should and will be suitable for other cancers”

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