Patient Stories

Voice of Kidney Cancer – Carol’s Story

In April 2019 the Food and Drug Administration (FDA) approved Keytruda (pembrolizumab) in combination with Inlyta (axitinib) for the frontline treatment of patients with advanced renal cell carcinoma (RCC).  We’re grateful to brave patients like Carol who participated in a clinical trial and helped make this treatment a reality for advanced RCC patients.   I have been retired for more than 5 years.  I have always been a person with a lot of energy.  In fact, I used to teach 3rd grade in an all boys school.  Energy needed there! In the fall of 2016, I began to have terrible night sweats, changing many times a night, and was just exhausted.  I went to my primary doctor who knows I’m not a complainer.  She could tell my lymph nodes were swollen and began doing tests. At first, lym...

Voice of Kidney Cancer – John Coulthard

Never give up! I was diagnosed April 2016 with bilateral stage 4 RCC at 63 years old. Zero symptoms so it was a bit of a surprise. Two surgeries – a full nephrectomy and a partial – by then one tumor was basketball sized, at Ochsner in New Orleans. Luckily I was able to retire and get full disability and went onto oral medication (Cabometyx). At this point I had not really realized that this is a manageable chronic disease and figured that I’d be dead in a year or two, so I traveled. Bought a small travel trailer and spent most of 2017 exploring the Rocky Mountains alone, hiking, fishing, camping, photographing and driving the back roads. I was born and raised in England so this opportunity to explore the American West was a dream come true– in fact , after spending...

Voice of Kidney Cancer – Caroline Sample

My kidney cancer journey was preceded by breast cancer, which was caught early through a routine mammogram. After two surgeries I returned to work in January 2010, the same month I celebrated my 60th birthday and my cancer-free status. We had learned much, including how to advocate for ourselves, ask for help and support and to celebrate every bit of good news. The thrill didn’t last long. One month after my return to work I felt dreadfully sick and vomited throughout the night. Strangely, over a period of several days, a beautiful ruby-red gem sometimes appeared in the toilet bowl. I realized later that this this was a blood clot. A visit to my PCP and a urine test showed evidence of hematuria, or blood in my urine, and an ultrasound rapidly followed. An appointment was made with a local ...

Voice of Kidney Cancer – Bryn Jones

Bryn is a member of KCCure’s Benign Renal Mass Community.  He shares his story of being diagnosed with kidney cancer, only to learn following surgery that his masses were benign oncocytoma. Many patients struggle with anxiety and guilt after such an experience. KCCure is committed to supporting these patients and working to better identify gaps in care for newly diagnosed patients preparing for surgery. I am Bryn Jones a retired police officer in the UK. Born in 1963, I led a healthy lifestyle and am in general good health. In December 2008 I had an excision of a small lump/tumour (sarcoma) from my left shoulder. The procedure was carried out by a plastic surgeon, the rationale was that it was believed to be a lipoma. From 2009 when I was informed that the lump was in fact a sarcoma,...

Thank a Friend and Help Fund Research!

Below is a tweet from Adam Stern – physician, kidney cancer survivor, and now best selling author of Shrunk MD – a book of cartoons that he recently published. “I’m reaching out to anyone who has influenced me over the months since my own diagnosis and offering to send a copy to help raise money for @kcCURE.” When Adam came to us with the idea of selling his book as a fundraising effort for KCCure – I was thrilled and grateful. When he raised over $5,000 in a week for kidney cancer research – I was amazed. His tweet this morning reminded me about how crucial the kidney cancer community is – and how important it is to help connect patients with one another. “I’m reaching out to anyone who has influenced me over the months since my own di...

Kidney Cancer Lessons – Laura Loughlin

I have stage 4 kidney cancer, clear cell Renal Cell Carcinoma.   I was convinced most of my life I would never be a cancer patient.  I can’t really explain why, just not something I ever worried about.  My life, my normal, has changed completely since my diagnosis.   Right now, I can tell you that in some ways my life is better than it was, more fulfilling.  I appreciate it more.  I have more time with family.  I have pursued interests that were on the back burner and made some great new friends.  I don’t know what the future will bring, and I don’t dwell on it.   In the end no one knows the future, right? In the past three years, I think I have had many experiences common to cancer patients. I’ve learned so much about loss. ...

Voice of Kidney Cancer – Rahson Taylor

Rahson is battling a rare form of kidney cancer called Hereditary Leiomyomatosis and Renal Cell Cancer or HLRCC.   HLRCC is a rare genetic condition that increases the risk of developing kidney cancer.  HLRCC is caused by mutations in a gene called fumarate hydratase (FH) gene. Rahson’s journey began after experiencing symptoms of nausea, significant lower back pain, and blood in his urine.  Initially, his doctors were confident that they could remove the tumor that was on his kidney but after further tests, they determined that the cancer was much more serious and that they couldn’t even perform the surgery at their location. He was then referred to another hospital where things really started to progress.  After a few indefinite diagnoses to include Renal Medullary Carcinoma and Co...

Voices of Kidney Cancer

KCCure wishes to thank everyone in the kidney cancer community for sharing their voices in March for Kidney Cancer Awareness Month. We received more stories than there are days in March!!  If you sent us a story and it has not been published yet, we have it saved for publication at a later date. Why do we publish stories? Each story is a reminder that no one is alone in the fight against kidney cancer.  Stories also help showcase the strong kidney cancer community that exists between patients, caregivers, providers, researchers — a community dedicated to fighting this disease together.  This month, we shared stories from people dealing with localized disease, metastatic disease and from loved ones dealing with loss. Ted shared his story of participating in a clinical trial – an...

Voice of Kidney Cancer – Aaron and Kim

My husband Aaron was diagnosed with stage 4 kidney cancer in February of 2018. A cough that just wouldn’t go away led to a chest x-ray that showed nodules in his lungs. The doctors ordered a CT scan that revealed a mass on his kidney.    I’ll never forget that life-changing phone call when Aaron called to tell me that the doctors suspected cancer. I took an emergency flight from Cleveland to be with him at the appointment.  The team in Grand Rapids recommended that Aaron start Cabometyx, which worked to shrink his tumors for the first scan.  But at the next scan, the doctor suggested switching to the combination of Opdivo and Yervoy.  Aaron breezed right through the first three infusions but by the fourth he was beginning to not feel well. He was very tired, not eating much, vo...

Voice of Kidney Cancer – Larry Inman

What’s the right thing to say to a kidney cancer patient? It’s not always easy to know. Larry Inman shares his advice. Diagnosed with kidney cancer in June of 2017, I had surgery to remove it in August.  I thought I had a clean slate, but was diagnosed with metastatic cancer in December of that year.  I am blessed beyond merit by the support system I enjoy and am certain I would not get through this without them.  Several friends have expressed uncertainty about what they could/should say as I travel this path, wanting to know what is going on, but not burden me.  They want to encourage but not offend me, and I love them for that concern.  None of us has a playbook on dealing with these matters, so there is no right or wrong answer.  For me personally, here is how I would respo...

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