What’s New in Kidney Cancer Research
May 8, 2024
Welcome to our new blog series where we distill the latest in kidney cancer clinical trials into essential updates for…
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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.
“No doubt the clinical trial has extended my life… 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 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.
May 8, 2024
Welcome to our new blog series where we distill the latest in kidney cancer clinical trials into essential updates for…
Read More
April 30, 2024
This is a guest post by Dawn Dyson, 37, who was diagnosed with translocation renal cell carcinoma in 2022. Dawn…
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April 22, 2024
This is a guest post by Amanda Reitz, a mother of three children who were 13, 9, and 5 years…
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19 thoughts on “A clinical trial helped Nathaniel Stout through a rare kidney cancer diagnosis”
Thanks, Nat, for your powerful story! We love you and pray for your continued healing!
Rose
Great article by a great guy…
This is beyond fabulous! I agree with clinical trials being used to prolong life and learn more about cancers ! Hoooray for great medicine!
Nat….. I’m so pleased the trials have worked out for you. Sounds like you have a couple “angels” in Worcester. May you continue along this upbeat medicine.
You are loved by many and have touched many lives over your years.
Semper Fi, Brother.
Hello Nat – I am just reading your incredible story. You are a true model standup Marine guy.
One of the toughest factors of aging is to experience the stories of lifelong friends and colleagues ending their journeys
on the road to eternity. Every day, I grieve the loss of John Bleyle with whom we remained in contact after they moved
to Georgia.
Take care of yourself old friend. Know you and Sharon are in my prayers tonight and beyond.
Peace and blessings.
Richard Daschbach
Thank you Richard, and blessings to you also. We miss seeing you here in Keene.
It’s wonderful to hear from you Richard. We miss seeing you in Keene so frequently as we did but I hope you have a wonderful life where you are. Thank you for your prayers and God’s blessings to you.
My husband had collecting duct cancer. It was also Stage 4 when found. Unfortunately for him, he did not make it and died in 2020. Nathaniel, I was so excited to see this post and read your story. To know there is a clinical trial out there that is helping you beat this thing makes me so happy. There is hope. I will keep you in my prayers! Stay strong!
And I and I will keep you in my prayers. I’m so sorry to hear of the loss of your husband. It must be so difficult for you. This is a tough disease. If I can take advantage of my situation so that others might benefit, the fight is well worth it. Thank you for your very kind note. I wish you Peace and consolation. If I can help in any way, please let me know. Nat
Nat, this is amazing. I am certain that you and Sharon and your family are thrilled with the results. I am sorry you have to go through this, but you are handling it all with grace. Blessings to you and to the doctors and nurses and researchers helping to prolong your life and the lives of others. I imagine the side effects of horrendous, but your are handling that with grace alao. Sending prayers to you and Sharon.
Nat, I am so happy for you and Sharon. It is amazing that you found this clinical trial and it worked so well. You are a great person who brings optimism into our world. God Bless you!
Keep on keeping on! Thank you for sharing your remarkable experience it gives so much hope for a wonderful life.
How wonderful that you found this! Thinking of you and Sharon and sending lots of prayers.
Nat, how wonderful of you to help medical science forge forward in this fight against such a cancer. It is heartwarming to hear how successful it is in extending your life. Your amazing attitude is inspiring to so many and especially me as I am the wife of a man fighting cancer as well. And on a side note, an old time dear friend of Lucy’s from Thomas School! We definitely met but I think you were off at school most of the time. Keep up the good fight! God bless you, and thank you for sharing your story.
Jan
It’s wonderful to hear from you Jan. And yes, I do remember you. I wish you the best… and for your husband. God bless you!
Nat, of course I didn’t know the details but I could see Victory written all over you!! Thank you for this article, for continuing to shine as an excellent example. You will continue to be in my prayers for you and Sharon and your medical team.
Peace! Pam
Mr. Nat! Wishing you continued blessings with this, seemingly miraculous, clinical trial drug. Adding to this knowledge base, indeed.
“Thanks to the clinical trial, Nathaniel was able to access cutting-edge treatment options and beat his rare kidney cancer diagnosis. It’s inspiring to see the positive impact that clinical research can have on individuals and their families.”
“Nathaniel’s story is a testament to the importance of clinical trials in the fight against cancer. His participation in the trial not only gave him access to new treatments, but also the hope and support he needed to overcome his rare kidney cancer diagnosis. We are grateful for the dedicated medical professionals and researchers who make these trials possible.”