Kick Kidney Cancer (Renal Cell Carcinoma)
Organized by: Logan Kinsey
As many of you know, my mom, Nancy Fink Kinsey, has been battling Stage IV, Metastatic Renal Cell Carcinoma. In English, she has Kidney Cancer that started in her right kidney and spread throughout her body. She has been fighting this horrific disease for over four years, first being diagnosed in January 2012.
She had been suffering from severe back pain, her doctors brushing it off as nothing more than a back spasm/pulled muscle. But when the pain persisted and worsened, she insisted on getting tests done – she knew that this wasn’t just a pulled muscle and her gut was telling her that this was something much worse. And unfortunately, she was right. X-Rays showed that her L3 (a vertebrae in her lumber spine) was fractured. Doctors became concerned – how could a bone in her spine just break? So they ordered more tests. CT scans, an MRI and a biopsy confirmed that this wasn’t just any ordinary fracture, that this was a tumor eating away at her bone, turning it to mush and causing so much pain.
Although the tumor had compromised her L3 and had eaten away at the bone completely, doctors strongly suspected that the cancer hadn’t originated there. So a full body scan was ordered. And there they discovered that the cancer had metastasized from her right kidney. After the full biopsy was completed, we were hit with the news that she had Stage IV, Metastatic Renal Cell Carcinoma, Clear Cell.
We were told that she was one of the lucky ones; that as rare as Renal Cell Carcinoma is, there were a few different options/treatments for the type of Kidney Cancer she had – Clear Cell.
We were hopeful heading into surgery. She had a partial nephrectomy of her right kidney, and an orthopedic spinal surgeon used the same incision to resect the tumor from her spine, removing the L3, and replacing it with a metal jack. However, because the tumor was so close to her spinal cord, the surgery couldn’t be a complete success – they weren’t able to remove the entire tumor as they feared hitting her spinal cord and paralyzing her forever. But they removed what they could of the tumor/mushy bone and replaced it with a metal cage.
The recovery from this double surgery wasn’t easy, but my mom, the strongest person I know, wasn’t going to let it slow her down. With months of physical therapy, rounds of radiation treatment, and learning how to walk again without the help of a walker, she was able to get her life back. A little short of a year later, she was starting to be more active, be more physical – she was even able to go on a hike with me – something I never thought she’d be able to do again. She even went back to work full-time. But a few months later, her back pain (that had never quite gone away) became stronger, making it nearly impossible for her to put on her socks and shoes on her own. And after new scans, it was confirmed that the tumor that was wrapped around her L3/spinal cord had grown – the pain a symptom of the tumor growth.
She went in for another spine surgery, but again, it was too close to her spinal cord to dissect it all – they had to leave some of the tumor in her back. And again, she went in for more radiation along with taking an oral chemotherapy, Votrient. But not only did the radiation not help, it hurt and set my mom back ten steps. The tissues/nerves in her back were angry that they were being radiated so many times. The radiation compromised the healthy tissue and created an open wound in my mom’s back called a seroma. The wound became so deep, you could see her spine. And because her chemo inhibited healing, her wound became infected with over ninety staph infections, making my mom even sicker than she already was.
Our house became a hospital. Nurses were constantly coming in and out, IV poles lined the sides of her bed, my dad learned how to pack her wound and change her bandages, and a pic line was inserted into her arm and remained there for over four months with round the clock antibiotics. She couldn’t leave the house for much other than going to the hospital or seeing her oncologist – she was a prisoner in her own home, a prisoner in her own body – she had truly become a cancer patient. And it was so hard to see her like this. And although I helped around the house as much as possible and tried as much as possible to make my mom happy, I was helpless. She was in constant pain and there was nothing I could do about it. She was in and out of the hospital for a variety of things – kidney stones, pain, vomiting, broken vertebrae…
A few months later, her oncologists had to take her off her oral chemotherapy, Votrient, because it was affecting her liver in negative ways. Afraid it could eventually cause liver failure, they switched her chemo from Votrient to Avastin – a chemo infusion that she would have to go into the hospital for every other week. With the news of potential liver failure and her first best option of treatment now thrown out the window forever, I felt like I was the one whose organs were shutting down. I was nervous and anxious – my mom, the best mom in the world, was getting worse and I couldn’t do anything about it. I quit my job to be able to spend all my time with her – I cherished every moment with her, I wanted to make as many memories with her as I could when she was still feeling okay. I wanted to be the one to take her to doctors, to sit with her during infusion, to get her dinner ready, to make sure she was eating enough protein – so I did. And it made me feel better – it made me feel like I was making a difference, that I was doing something. But at the same time, I knew that quitting my job, that sitting with my mom during chemo and that preparing her dinner, wasn’t the solution to her kicking her cancer. In the larger scheme of things, I knew that none of my efforts would cure my mom. My love for her wasn’t enough and once again, I felt helpless.
Although her new chemo slowed healing, her wound eventually healed (after many wound vacs – it took about a year’s time and two surgeries later. They pulled muscle from her shoulder and took a skin graft from her leg to restore the back to as close to normal.)
She was on Avastin for almost a year until this past October when they did the routine three month scans and found that her tumor wrapped around her spinal cord/L3 had not only grown, but the cancer had spread to another part of her spine, her T12 (thoracic spine.) And of course, with the growth and new metastasis, came a lot more pain. And there was nothing I or anyone could do to take the pain away.
They took her off of Avastin as soon as the new growth was detected and started her on a new chemotherapy infusion, Obdivo. Obdivo is newly FDA approved for Renal Cell Carcinoma (when she started on it, it still wasn’t approved yet,) but her oncologist was excited about its potential, hopeful that this could not only stop the growth, but also shrink and kill the tumors. We were excited – this was the first time we’ve ever heard talk about shrinkage – something I had been hoping for since the day she was diagnosed.
After being on Obdivo for 8 weeks and starting a new round of radiation treatment (only for the tumor on her T12), my mom started getting really sick, with nausea, vomiting, and extreme back pain – worse than ever. She was admitted into the hospital several times for pain management and to see what was causing her inability to keep anything down. And new scans were ordered.
The results were heartbreaking. The tumors hadn’t shrunk, in fact they both grew larger, causing more unbearable back pain and nausea. They decided to continue her on the Obdivo, telling us that sometimes the start of this chemotherapy flares the tumors up before shrinking them down. So we stayed hopeful and my mom continued her biweekly infusions. After a few more months on the treatment, a pit grew in my stomach. My mom’s symptoms seemed to worsen – back pain was more severe each day, nausea continued, and the most troubling, she was having difficulty moving her legs on her own – she needed help to lift her legs into bed, her legs so weak she could hardly make it up the three stairs leading to our front door, and she was falling – her legs unable to hold her up any longer, one leg completely numb to the touch. Her doctors ordered new scans right away and as expected, both tumors on her spine had grown.
The tumor on the T12 is now so big that it’s pressing on her spinal canal, her doctors worried that if it grows any larger, it can compromise her ability to walk. And the tumor on the L3 is so large, it’s pressing on her nerves causing excruciating pain to her legs. Worried that the tumor can cause paralysis, her doctors have taken her off of Obdivo as it has proven to be a failed treatment for her and are hoping to get her into a clinical trial. We visited with her spine surgeon in hopes that he could go back in and remove as much tumor as he can, but unfortunately, surgery is no longer an option – the doctor’s believing it can cause more harm than good. And the same goes for radiation – having undergone three different rounds of failed radiation treatments, her back can no longer be radiated as it’s compromised her healthy tissue. So right now, we are trying to get her into the clinical trial. But in order to get in, she needs to be approved and in order to be approved, she needs to go through a slew of tests, procedures and scans. Also, her body needs to be cleared of all chemotherapy for 28 days for her to be allowed in the trial which means for the past month, she has nothing fighting the tumors or trying to kill her cancer and each day, I see my mom decline – more leg/back pain than the last day, her legs too weak to walk, the only relief she can find is by staying in a flat position in her bed. On so much medication and pain relievers, it’s hard for my mom to stay lucid and form conversations. I miss my mom so much.
And I hate seeing her like this – loopy and confused, and in terrible pain. But unlike before, I’m going to do something other than sit by her bedside and feel helpless. This time, I’m going to raise awareness – Renal Cell Carcinoma isn’t the most common cancer, but it’s a cancer that needs more funding. We need to raise awareness so that all of the research they are doing can make a difference. Doctors, researchers, and scientists believe that they can find a better treatment, possibly, come up with a cure for this horrible disease. But everyone needs to pitch in to make this possible. Renal Cell Carcinoma/Clear Cell research needs donations. Everyone who knows my mom knows how strong she is, how caring she is, and knows that she’s been suffering for over four years from constant pain. You’ve seen what this disease has done to her and what it’s done to our family. Those of you who see her, but don’t know her as well probably had no idea all that she has been through. Her scars are covered by her clothes, her hair still as thick as ever even with all of the chemo, her cheeks a flush red, not from makeup like most may think, but from the steroids she has to take for inflammation of the tumors. When she goes out into the world, you wouldn’t know all that she’s been through, all that she’s faced with, and everything her body is fighting against. But those of you who have seen her behind closed doors, know of her constant pain, know that she’s unable to bend over to take off her shoes, to sleep through the night, etc. And now it’s gotten to the point where she can’t leave her bed, let alone the house. Her pain is so bad, her legs are so weak that walking to the family room is a big feat.
There’s so much that cancer has taken from her, but her hope and my hope stay strong. But we need your help to make a difference, especially if we want to see a change soon – there are drugs that will be able to save her, so let’s make it possible for her to receive the right treatment. If she’s not accepted into this clinical trial, she doesn’t have many options left. But with combined effort, she can. Researchers, scientists and doctors are working on new treatments every day and with funding, they will be able to get those treatments on the market to patients faster. And right now, time is against us. My mom is getting worse each day that there isn’t a new drug for her to take (she’s still on the 28 day waiting period before hopefully being approved for the clinical trial.)
This means a lot more to me than curing cancer. This is about saving my mom. And I’m realizing now that I’m not helpless in this situation. This is what I can do to make a difference, but I am asking for your help to do it – help me save my mom. Please.
Donate what you can and help make a difference too. With more research comes more medicine and her oncologist says that they’re on the cusp of life saving drugs. My mom means the world to me and she affects the lives of many others too. I’m not helpless any longer. This is what I can do – this is what we can do. Help save my mom with me.
In 2003, there was not one single drug available for Renal Cell Carcinoma, Clear Cell. Now there are a number of treatments that are being used to prolong life for this type of cancer and there are many more affective drugs that are being explored and developed. Let’s not just prolong my mom’s life – help me find a cure. Help me fund research for my mom’s cancer.
All proceeds go to Renal Cell Carcinoma, Clear Cell Research Fund.