The Importance of NET Conferences: A Guest Post by Daiva Debra Minter

The 5th Focus on Neuroendocrine Tumors Conference at Penn co-sponsored by NETRF was an important, informative, inspiring and fun experience on many levels. This was my fourth NET conference in all, and I am already looking forward to the next one, whether it is at Penn or Stanford or beyond. And If I don’t attend in person, I will livestream and enjoy it from home base. If you were not in the City of Brotherly Love or missed the livestream you can still experience the conference, see and hear all the terrific speakers, sessions, exciting news and what’s in the pipeline for cures and improved treatments in the video replay provided by our friends at NETRF.

I have attended three NET conferences in the flesh and one livestream, which is certainly a great option. One of the highlights of attending in person is the opportunity to meet face to face with our NET Community. We are a tribe. And here are our people. Networking and making new friends, allies and connections is a natural process at these conferences. We patients, our loved ones, our doctors, nurses, researchers, donors and various crucial support teams together to learn, teach, share and get us better. It is a unique networking opportunity to be with those who understand you, as they are living the life. One can ask questions and get answers, solutions, opinions and resources from NET experts, doctors AND patients. Additionally at this conference Survivorship and Integrative Therapy experts were available to talk one-to-one offering resources and referrals i.e., Coping with Emotions, Genetic Counseling, Living Your Wholeness, Nurse Navigator, Nutrition, Herbs & Vitamins, etc. I so appreciate this acknowledgment of healing and support emotionally and mentally as well as physically. We need an Integrative Medicine Department at Penn and to include Integrated Medicine on the NET conference agendas.

It is so very powerful to see institutions, foundations, brilliant minds and hearts dynamically working and intent on discovering/creating a cure and better treatments for NETs. Many hands hold us up and it is exciting to experience the momentum and support. I am not alone fending for myself. And neither are you.

My first NET conference was at Penn in October 2014. It was a decisive experience for me and I am still benefiting from what I learned and whom I met at that conference. It was a real game-changer for my medications and therefore my life and health. I had been agonizing for months over the recommendation from my doctor to begin the Cap/Tem regimen. I had many fears. Over breakfast, I met two awesome people, both on Cap/Tem. They candidly and generously shared their personal experiences and results of using Cap/Tem. That conversation inspired me to find the courage to begin Cap/Tem. And I have been progression-free since starting in December 2014. It is life supportive for me. At the same conference, I learned from our keynote speaker about a potential side effect of a somatostatin analog being elevated on blood-sugar levels. For a functional Insulinoma patient, like me, that is very beneficial. I learned it was FDA approved in December 2014 from a NETRF email trumpeting the good news. I was on the new medicine the next month. I am doing and feeling wonderful and so grateful to be using these medications. Knowledge is power. And I got it at that conference.

I livestreamed the 2016 Bay Area NET Conference. Josh Mailman, top-honored expert Patient Advocate, casually mentioned going “forest bathing.” Never heard of that one? I googled it and learned it’s about submerging oneself in the healing power and energy of the forest, stillness, breathing and beauty and receiving all the gifts in nature. That’s for me! – I thought. I have some woods in my area – so off I went to “forest bathe” and loved it. This week I am going on a 5-day “Forest Bathing Retreat” at the Kripalu Yoga Center. Thanks for the tip, Josh! You never know what you might learn and how it may positively impact your life and health. But chance favors the prepared mind and heart. I go to the conferences open and curious to all I will receive. But I also have an agenda, specific questions for the speakers and intentions for the day.

As you probably have already heard, the announcement of the recent magnificent $250 million gift from Sean Parker of the Parker Institute for Cancer Immunotherapy was another high point of the day. It unites six of the nation’s top medical schools and cancer centers with the shared aim of accelerating breakthrough immunotherapy research. Penn is participating and our own Dr. Carl June (already working for NETS, thanks to a grant from NETRF last year) is now the Parker Institute’s Penn Director. Thank you! I enthusiastically look forward to cures and improved treatments from this research.

The conference concluded. Outside full of thoughts, I felt the sun warm and the spring wind gentle on my face. I became mindful of the intensity of the conference day, the information, the gravity of it all. Like shining a flashlight in a dark room, our focus was very concentrated. One can forget what is in the darkness, what we do not know or cannot see, waiting to be born. I was aware of feeling a tension in my body. I stretched. Looking up I was surprised to see the moon. She was beautiful. I felt myself expand, relax and integrate with the universe and knew everything is possible.

In gratitude,
Daiva

About the Author

My name is Daiva Debra Minter and I am a five year survivor/thriver of a very rare NET (Neuroendocrine Tumor Cancer) specifically, Malignant Insulinoma (Functional) w/Liver Mets. The primary tumor remains unfound. I am an active NET patient Advocate/Activist. At this time, I require and benefit greatly from numerous and various conventional and nuclear medical treatments and therapies. As important to my balance and health is my holistic yogic lifestyle, which includes meditation, prayer, diet, mind/body connection and quantum thinking. I strive to live a conscious life, supporting and nourishing body, mind and spirit. I am a professional photographer and visual artist, certified Yoga, Yoga Dance and Laughter Yoga instructor. My essential diet includes living raw vegan green juices and cuisine. I am the CEO of Save My Ass, Inc., (aren’t we all?) I want to share my challenges and discoveries as I invent the wheel in this odyssey and to share my wheel while helping myself and all involved.

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Thanks, I agree, conferences are really powerful ways to communicate about cancer, for learning opportunities and for meeting specialists and other patients. Good luck with everything!

Denise

Thanks for the great sharing. Did not know about the grant from Sean Parker of the Parker Institute for Cancer Immunotherapy. Wow. I trust clinical trials will start soon at Penn. Thanks again.

Jeanne

Thanks for sharing so much Daiva! I didn’t know it was called “forest bathing” but it’s a wonderful thing as is hugging a tree! You’ve inspired me to attend a conference – nameste

Sunny

Daiva,

Thanks so much for sharing the wealth of information about the conference and tying a community together. I hope you’ll share greater details of methods of food and health management you’ve found to be effective. It’s great to know there’s a network of information out there and sharing participants, you should do a blog!

Happy Forest Bathing!

The Importance of NET Conferences: A Guest Post by Daiva Debra Minter