This is a guest post by Nathaniel Stout, who has a stage 4 collecting duct carcinoma diagnosis. He is based in New Hampshire.
I was diagnosed with advanced, stage 4 collecting duct carcinoma (CDC), a rare and aggressive kidney cancer with a poor prognosis, in 2021 following two biopsies roughly two months after my cancer was first discovered.
At that point I underwent gemcitabine-cisplatin chemotherapy treatments at my local hospital in New Hampshire. That treatment worked as expected, stabilizing my cancer for a few months. My vertebrae and my left shoulder, both of which had pathological fractures, were also radiated to control the cancer in those areas. These treatments were very helpful, but of limited effectiveness against this mortal affliction and left me with some after effects, most notably neuropathy.
Next steps remained a question – there are few accepted follow up treatment protocols for my disease. During the chemotherapy, I researched clinical trials on the Internet and was so fortunate to find a trial at the University of Massachusetts Medical School in Worcester, Massachusetts overseen by Dr. Kriti Mittal.
I began my clinical trial treatment in March 2022 and am soon going to receive my sixth and final infusion of radium 223 dichloride, also called Xofigo, which I take in combination with a daily dose of the treatment cabozantinib. The Xofigo is intended to fight the cancer in my bones. And results of a full body scan in late May indicated no cancer in my bones where once it had been! As of now my soft tissue cancers are stable. Given the dire prognosis of my disease, these findings are remarkable.
I cannot overstate how careful, empathetic and effective my treatment team at UMass has been. They are primarily Dr. Mittal and Clinical Trial RN Barbara Butler. The care from them and the team at UMass is top notch! I’m not sure how, but almost every time I visit the UMass Medical Center I leave in a better, more optimistic mood. There was an occasion when one radiologist defined my CT scan differently than the previous radiologist had. This cost me some worry, which was quickly alleviated by Dr. Mittal’s careful, and above the call, attention.
Side effects of my current treatments are mainly affecting my digestive and thyroid systems. I had already developed neuropathy from my previous, more conventional chemo treatment last fall. The combination of all these after affects cause me the most discomfort.
No doubt the clinical trial has extended my life. I’m participating not only because I want to live longer, but also, and more importantly, I want to contribute more to the knowledge of this strange and rare kidney cancer.
I’m a veteran of the U.S. Marine Corps and lived for 20 months at Camp Lejeune, North Carolina, where I was exposed to severely contaminated water. Subsequently the US Department of Veterans Affairs (VA) has supported me by paying the many bills and providing me with disability compensation. Collaboration between the VA and my hospitals has been key, especially for sharing data.
I worked for many years in computers and publishing. The skills I developed have helped me navigate the Internet, which in turn has, to put it mildly, helped enhance — and extend — my life these past several years.
I am so grateful to everyone and every institution mentioned above, and to my incredible wife, Sharon, and a wonderful support network here at home. How to extend my gratitude to them is my greatest challenge.
August 2, 2022
This is a guest post by Nathaniel Stout, who has a stage 4 collecting duct carcinoma diagnosis.Read More