Patient Stories

Celebrating Kidney Cancer Caregivers

Laura Loughlin shares the story about how her cousin Diane stepped in to serve as her caregiver during a particularly difficult time of her cancer diagnosis. This week, we’re celebrating the many different caregivers that help improve the lives of cancer patients.  I was diagnosed with Clear Cell Renal Cell Carcinoma in 2016.  Following surgery, my cancer was found to have spread to my thyroid and was treated with high dose radiation. Since then I have remained stable without additional treatment.  Several weeks ago, my CT detected a new mass in my neck.  Local efforts to confirm what the mass was were not successful and I needed to be seen by specialists in Boston.  Needing to see a doctor in Boston always causes me stress, as I have to arrange for rides to get back and forth to Bos...

Celebrating Kidney Cancer Caregivers – Zach Juno

Zach Juno shares his journey as a caregiver and fierce advocate for his mother, a stage 4 kidney cancer survivor. I’ll never forget hearing it. “Your mother has a tumor the size of a tennis ball on her left kidney” That was the day I became my Mother’s advocate and cancer caregiver. This was in March of 2006 and the landscape of kidney cancer was so different.  We kept reading things like “Renal Cell Carcinoma doesn’t respond to chemotherapy.” I immediately started reading statistics on the disease and remember breaking down in my living room. My mother, who has always been the center of my world and only 58 years old at the time had cancer and I just wanted to save her. I think I was trying to save myself too.  We were referred to a Urologist in the town she lives in. Our whole fami...

Barcelona

Six months before he died, my husband Chris watched a documentary about La Sagrada Familia, a basilica in Barcelona, Spain. He became fascinated with the project and told me how much he wanted to see it in person.  Begun in 1882, La Sagrada Familia has been under construction for more than a century. When architect Antoni Gaudi first designed the project, he knew it would never be completed in his lifetime, and when he died, only a quarter of his vision was constructed. It’s estimated to be complete in 2026, and when it is done, it will be the tallest religious structure in Europe. I don’t know what it was about this building that fascinated Chris so much.  Perhaps it was the grandiosity and magnitude of the effort. Perhaps it was the perseverance of so many to bring th...

Voice of Kidney Cancer – Mary Kammerer-Miskovsky

Our life changed forever when my husband Rick was diagnosed with Stage IV aggressive clear cell renal carcinoma on New Years Eve of 2018. In the beginning, all I knew was fear until I joined KCCure. The amazing support we have received is beyond anything I could ever have imagined. Because of KCCure we went for a second opinion and found an AMAZING RCC oncologist, Dr. Chuck Drake, at New York Presbyterian/Columbia University Medical Center. My husband is currently in a clinical trial and responding well. We have HOPE again. I want to help others realize there is HOPE.  I want them to know there are many tomorrows left. Our Story is FAR from OVER and I want others in the same situation to know neither is there’s. Mary Kammerer-Miskovsky is a patient ambassador for KCCure. SheR...

Voice of Kidney Cancer – Naomi Henley Grossman

So it’s July and it’s one year since my life changed. This was the day my doctor told me my hemoglobin had crashed to 5.2 and I had to go to the hospital for a blood transfusion. Even then, I had no clue that my life would never be the same again. It took another six weeks till they found the 15 cm cancerous tumor on my left kidney. After my kidney was removed I had 3 months of blessed remission before I was re diagnosed – this time with stage 4 RCC, including metastases in my lungs. What a year it has been, for me and my family. Having cancer is not just a terrible disease. It’s not just a bunch of often painful and unpleasant symptoms. It’s not just about the fear of death, of getting worse, or how my children would manage if I left this world. It’s a lot more than that. It’s about...

Voice of Kidney Cancer – Chester’s Story

I was diagnosed with kidney cancer mid-April 2019.  I was scared and had no answers. Having little experience with cancer, I basically thought I was dead and leaving my wife and 3-year-old all alone in the world. The first surgeon I met with told me they would need to do an open incision about 12-18 inches across my body. He told me it was the only option. They weren’t talking to me about my cancer diagnosis.  They were just talking about how they were going to cut it out.    I began seeking help through online support groups and forums. Initially, I was just looking to vent about my situation and have someone tell me I wasn’t going to die.  That’s when I first heard from KCCure. After sharing my story in an online community, they sent me a dire...

Voice of Kidney Cancer – Ted Engel

We buried my brother in law yesterday. Five years ago, he drove me to get one of my first infusions in an RCC clinical trial. For me, the drug that was being tested resulted in a complete response for my stage IV disease. Eighteen months ago, he was diagnosed with stage IV lung cancer. The irony is that he also had the same immunotherapy treatment that I had. (now FDA approved for Lung Cancer but not yet for Kidney Cancer). When I started on it my immune system went absolutely nuts. The doctor felt that was a great sign and he was correct. The results of my first three month scans were dramatic. When my brother in law started treatment I kept asking him about side effects and he had none. His disease didn’t respond at all. So frustrating how we all respond differently. One family wit...

Voice of Kidney Cancer – Christiane Waked

Change your perspective and make cancer a thriving experience to become your best self. In October 2006, I was sitting on a bench in Paris, crying my eyes out while it was pouring rain on me, as if the sky was feeling my pain and sobbing with me.  Earlier that day, a man in a white blouse articulated a two-syllable word that every sensible person fears: “Cancer”, he said, “Death”, I thought. That year was a turning point in my life. I had just found out that my mother was going to start dialysis; she was diagnosed with polycystic kidney disease and her kidneys were failing. My instinctive decision was to donate my kidney so that I could save her from the burden of dialysis. Despite the fact that my mother who lived in Beirut, where I am originally from had rejected the idea of taking ...

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 ...

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