Jud Kimmel Shares his NET Journey
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Please welcome our guest writer Jud Kimmel for this month's Karalyn Cares. Jud is a NET patient, an advocate and someone I find to be proactive for his his own health and compassionate and helpful to others. Learn about Jud's NET journey and Karalyn will be back next month!
Thank you to the Healing NET Foundation for inviting me to share a little about my NET journey and my passion for patient engagement.
After a year or so of worsening diarrhea, skin flushing, and shortness of breath, and several frustrating medical dead ends, I was diagnosed with Stage IV, Grade 3 Small Bowel NET in September 2022. Tests confirmed many metastases in my mesentery and liver, as well as mild carcinoid heart disease thanks to the hormones secreted from my functional tumors.
I was a patient advocate, for myself, from the start of my NET journey – devouring the educational resources offered by the Healing NET and other neuroendocrine cancer (NEN) organizations. I was fortunate to have a general oncologist who referred me right away to a NEN specialist, which led to my enrolling in the NETTER-2 clinical trial and receiving PRRT (along with both short-acting and long-acting Octreotide) as my first line of treatment.
PRRT shrank and stunted my NETs and reduced my carcinoid syndrome symptoms by killing my largest liver NET and it opened the door to the tumor resection and ablation that I underwent last fall. I’m currently NED and although I know my Stage IV disease will return at some point, I love being able to focus my “cancer energies” in other directions.
NEN patients and caregivers are supported by excellent advocacy groups but I myself struggle to keep track of everything happening. My own need for a clearinghouse of sorts led me to start the Neuroendocrine Cancer Event Hub on Facebook – which is simply a master calendar of upcoming educational events. I monitor roughly 20 advocacy websites and post upcoming conferences, webinars, and Q&A sessions to the calendar. I’m now developing a website called NENfolk.org: the master calendar plus a guide to the many videos, podcasts, and other forms of content out there. My goal with NENfolk isn’t to reinvent any wheels but rather to assist people in finding the learning resources that work best for them.
Another passion for me is in building connection and agency among men with all types of cancer. Men are much more likely than women to isolate themselves, suffer shame and depression, and be passive in their own medical care following a cancer diagnosis. . Studies indicate that men have lower survival rates and outcomes compared to women with the same cancer types and stages. I myself was severely depressed early in my NET journey and I am incredibly thankful to have found a men’s peer group called Man Up to Cancer: manuptocancer.org. MUTC is changing what it means to be a man navigating cancer, and I find that the brotherhood borne of shared experience and understanding is key to my own wellbeing.
And finally, in receiving Dotatate PET scans and PRRT, I became fascinated by the rapidly evolving field of nuclear theranostics. I’m excited by the creation of new radiopharmaceutical therapies (RPT) to treat more forms of cancer – that is, beyond NET, prostate, and thyroid – and I share my story in the hope of helping to advance RPTs for everyone needing better treatment options.
Going forward, I look forward to building NEN patient knowledge and engagement in their care decisions, and encouraging men especially to lean in. Countless social media posts from the wives, daughters, and mothers of men with NENs suggest that many men defer to their female loved ones, as well as health care practitioners. I want to be part of changing that paradigm, with more men educating themselves, connecting with other patients, and making confident decisions in consultation with others.
The other day, a well-known and respected NEN patient advocate gently chided me for introducing myself with “I’m a Stage IV, Grade 3 GEP-NET.” Her point was that we are much more than the disease with which we are living. I’m a husband, father, feeder of a dog and two cats, homeowner, brother, son, friend, Minnesotan, public finance advisor (my day job), music lover, and indoor rowing enthusiast – just to name a few. It took me a long time to figure out how to add “NET patient, probably for the rest of my life” to the list without having it overwhelm everything else.
Getting involved in the NEN, men’s cancer, and radiopharma communities has helped me get there. Being part of things that are bigger than myself has lent me new perspectives on my “incurable but treatable” NET situation and given some much-needed purpose to having this often frustrating and scary disease.
I know that not everyone has the time, health, energy, resources, or motivation to engage in patient advocacy, but I hope this story maybe inspires you to connect with another person who is going through it, just like you are. That alone is about as powerful as it gets.
