Gallium 68 is here, what does that mean?

Essentially, the new Gallium scan (hereby now known commercially as NETSPOT) is the next generation of OCTREOSCAN. While it was good for its time, the gallium scan finally brings our NET community into the 21st century. The way the test works is we inject you with the drug called "68-Gallium-DOTA-OCTREOTATE". It is a form of octreotide (which binds to a receptor on many NETs called the Somatostatin Receptor) with a light bulb on the back. You let it circulate through the body, then lie in the machine where the PET scanner can take pictures of you. In general, many NETs will light up; NOT ALL WILL. However, the resolution and sensitivity is so much better than our old Octreoscan. In fact, as many of you who have seen me know, I'm holding off on many surgeries until I have it here in Denver, it means SO much to me. When I was back in Nashville, many of our patients benefited from this new technology and really had good surgical results thanks to it. That's why I feel if I can do a better surgery for you, then I want the best information possible. I have a couple of YOUTUBE videos on the technology. Take a look and then you'll see what I see.

The other very interesting thing is that the NETSPOT is probably going to be a companion diagnostic test for the coming therapy LUTATHERA, which is the therapeutic radioactive version. Rather than just a light bulb, it's a bomb and gives you internal radiation therapy. Go to PRRTinfo.org to read about it. I hope this new therapy will be available soon here in America.

Now, as far as logistics, just because it is FDA approved doesn't mean that it will be available in your hometown hospital. The most important part is still having the RIGHT EXPERTISE to use the information to help you. As the first NET clinician in the United States to really work closely with NETSPOT, I feel comfortable giving you advice based on the information. My suspicion is that the nuclear medicine physicians will do an excellent job reading the scans, but it is still the NET expert that will apply it to YOUR case. Therefore, it will probably be available first with the NET experts (which makes a lot of sense to me).

As far as insurance coverage, it will come, but it may take a while. I don't know what the details are, but in general new drugs or technology may take a little while to catch on, so you may have to pay cash for the scan up front and then fight with the insurance company to cover. When MEDICARE adopts it, the insurance companies will follow quickly.

My friends, you don't know how excited I am about this new technology. I'm hoping ours will be here in the middle of the summer and then we can really do the best surgery for you. It is the beginning of a new time for us here in our NET world! Be strong, safe, and healthy.

Eric Liu

Happiness, Health, and Hope for 2016

Dear Friends of Healing NET Foundation,

I am a nature lover. Growing up on a Kentucky farm shaped a fascination and wonder of growing things. I enjoy planting a seed or seedling, watching it sprout and grow, and seeing it become the mature beauty it was intended to be. Of course, along the way either myself or the rainfall and sun have to to be present to keep it alive and growing until it blooms.

When I look back on this year I feel the same wonder and fascination about the beginning and the journey of The Healing NET Foundation (HNF).

In 2013 it was an idea, beginning with a conversation between myself, a neuroendocrine cancer (NET) survivor, and the most compassionate and knowledgeable physician I’d ever met, Dr. Eric Liu. Based on our collective experiences, me as a NET patient seeking information on a strange and unknown cancer, and he as a physician immersed in the care of those patients, we agreed there had to be a better path for ALL the Zebras out there. Dr. Liu had established the first clinical trial in the United States for the Gallium 68, and patients like myself were benefiting from a better diagnosis and understanding of this disease. He knew there was much more work to be done; establishing more successful treatment programs in this country, and educating primary physicians on the basics and intricacies of NET cancer and carcinoid syndrome.

In 2014, surrounded by a core group of supporters and encouragers, we began planting the seeds. Our Board of Directors began setting budget and program goals, we achieved 501c3 status with the IRS as a charitable foundation, we launched a website and social media, we partnered with other patient advocacy organizations to hear your stories, we connected with other NET physician experts, and supporters like you entrusted us with your contributions. The seeds of hope took root and began to sprout.

In 2015, HNF has seen the buds come forth, and it has grown beyond myself, Dr. Liu, or our core group. Our Board of Directors, and Advisory members, expanded to include individuals all across the United States. Some are patients, some are caregivers, and some are here because they are inspired by others. All have a collective passion to make a difference. Dr. Liu organized a Scientific Advisory Committee (Dr. David Metz, Dr. George Fisher, Josh Mailman, Dr. Thomas O'Dorisio, and Dr. Kjell Oberg) to create our first publication to educate primary physicians. Over 1,000 copies of the NET Primer for Health Care Professionals has been given to patient support groups, clinics, and industry. One Board member utilized his skills in marketing to launch the first INSIGHTS surveys to find out from you how patients and caregivers feel about their care, and what your physician experience is like. HNF has begun a working relationship with The Neuroendocrine Institute at Rocky Mountain Cancer Center, established when Dr. Liu partnered with Dr. Allen Cohn in Denver, CO to create a new home of top care for NET patients. We funded 11 nurses, nurse practitioners, physician assistants, physicians and physicians in training to join NET experts at their annual NANETS conference in Austin, Texas to learn more about this disease and bring the knowledge back to their community. We expanded our website and social media with Zebra stories and physicians blogs. Thanks to another Board member, we were thrilled to have guitarist, composer, and vocalist Trey Anastasio of Phish honor his departed sister and create a public service announcement to bring awareness to World NET Cancer Day. Most important, YOU have continued your important nurturing with contributions and support. It takes many people to keep this garden of hope growing.

2016 is going to be pretty exciting and HNF has set some aggressive goals. FDA approval of the Gallium 68 is imminent. Establishment of PRRT therapy is just around the corner. We want to be sure everyone knows about Gallium 68, especially primary cancer doctors. We want to get the NET Primer in more physicians’ hands, and organize our Scientific Advisory Committee to navigate us through best steps to impact NET patient care. HNF is sponsoring an International Summit of NET experts hosted by Dr. Liu, Dr. Cohn, and Dr. Nutting in Colorado, where European and U. S. physicians will debate and discuss new ideas and developments on the horizon, and pharmaceutical and other industry folks will take away understanding and new directions. We will conduct more INSIGHTS surveys to get your input and we will establish fundraisers and new donor directed programs for patient care. We will continue to nourish the seeds that have been planted.

The Healing NET Foundation thanks you for your incredible support, and we have no doubt that your continued donations and your sharing our work with family, friends, employers, business leaders, and media will bring the blooms of hope bursting forth in 2016.

Thank you, Cindy Lovelace Executive Director and PNET survivor

When Surveys Really Matter

Surveys are a popular request…you know this. The oil change place wants to know if you had a good experience, Amazon wants you to rate the product you bought, Expedia wants to know how your trip went, the new restaurant wants to know if their food was good, and the list goes on.

Let’s be honest. I do the eye roll too when I receive the request. I DONT HAVE TIME TO FILL OUT YOUR SURVEY! Plus you are just going to irritate me with another marketing ploy based on my answers anyway. Forget it.

But sometimes surveys really matter. As much as I hate filling out all that information at the doctor’s office that I was certain I’ve filled out before, I really want to be sure they know what I’ve been through and what I’m experiencing now. My health is at stake.

It’s why we introduced the idea of the Healing NET Foundation INSIGHTS Survey. We want to better inform the medical community as to what NET patients have been through, and what they are experiencing now. Not just one patient, not just ten patients, but hundreds of patients. We want to come up with some numbers that are going to get attention, now.

It’s not for a marketing campaign, it’s not to sell you anything, or to pat ourselves on the back.

It’s simply because our health is at stake. That’s when surveys really matter.

If you have not done so yet, please take a few minutes to help us out. Click here for Insights Survey

Thank you!

Cindy Lovelace HNF Executive Director and PNET survivor