Because nutrition is a specific problem for NET patients, we asked expert nutritionist Leigh Anne Burns to provide some tips on healthy summer eating. Check out the Zebra Blog “Healthy Summer Diet with Carcinoid Syndrome” and also a diagram from NET Fusion (Novartis) to help patients with carcinoid syndrome better understand their food.Read More
The 2017 Healing NET Summit of NET expert physicians is one of the programs your contributions support. HNF Co-Founder and Chief Medical Advisor Dr. Eric Liu.
My goal is to start and finish the race. The idea of a 13.1 mile race (Half-Marathon) is pretty daunting. If you’ve never done anything like that before, even 3.1 miles (5K) sounds intense.
Last fall when Cindy Parcell brought up the idea of inspiring fellow Zebras and their friends to join her for the Rock N Roll Marathon in Nashville Spring 2017, I immediately said “I’m in!”. It was not because I’m some elite runner, or even a decent Saturday morning neighborhood jogger. I admittedly like challenges, and I love it even more when people come together to achieve things. I think that’s how we are meant to live. My life is also focused on the commitment made when Dr. Eric Liu and I co-founded Healing NET Foundation—to help neuroendocrine patients get the best and the right care. While it’s important to run the organization to the best of my ability; I also feel a responsibility to be a role model. I can run for those who can’t, and inspire others to do the same.
However, let’s put all the cards out there. I knew in the back of my mind that I had trained and finished an entire Marathon course once before. I was also inspired by “Coach Cindy”. She’s a patient and she runs these races all over the country! Now, she told me her “Panda” team was not leading the pack, but my enthusiasm might have slightly blinded me to some new realities.
When I did that marathon in 2002, I was 15 years younger, I had never had a cancer diagnosis, and I was about 20 pounds lighter. So, when I laced up the running shoes and started in on Cindy’s suggested training schedule back in January, reality set in. My body had changed.
The first reminder was the stretching. I had fallen behind on my yoga exercises, and I needed to stretch…a LOT, before and after. If I didn’t, I’d be hobbling through my day. Then, I was dismayed that one mile on the treadmill was exhausting, AND I was just doing a slow jog. However, I kept going, and even when travel and a respiratory infection interfered, I just took up where I left off and kept plugging away. I didn’t beat myself up over missing a day, or not completing the suggested number of miles. It really reminds me a lot of fighting cancer. From my first cancer diagnosis in 2005 (breast) to my second one in 2011 (neuroendocrine) I’ve always had the mindset to just keep going…ride out the storm…try to keep one step ahead of the beast.
The beast played a big card recently when my husband and I went on a family trip, and we had the opportunity to participate in a 5K. It was fun and in a tropical place, and I was training…so why not! During the race, the neuropathy I’ve dealt with ever since chemo treatments with my breast cancer, reared it’s ugly numbness and pain. My feet felt like dead weights. I had been doing a combination fast walk/run and during the run part, I stumbled a couple of times. I decided then that it was not worth the risk of a fall to push myself to do something that my body just can’t do. However, it doesn’t mean I quit. I find a different way. So, I power walked the rest of the 5K, using mind focusing tricks I learned in my first marathon training. It wasn’t pretty or graceful or fast. I just finished the race.
So, my training is now focused on my walk. I can do a 15 minute mile, and even if I’m not up to that speed on race day for whatever reason, I still have some grace to finish the race under the four hour maximum. It doesn’t matter what place I’m in, or how many people pass me, or how athletic (not) I look. I’m just going to take it a mile at a time, and I am going to start and finish the race.
I have pretty strong feelings about the timing of surgery. I understand that when people hear about having ANY kind of cancer they want to have it removed as soon as possible, but that’s not always the case for neuroendocrine. In general, neuroendocrine tumors are very slow growing and you’ve probably had the tumors for a while. In a truly newly diagnosed patient, it’s always best to take a deep breath, understand what’s happening, do ALL the tests necessary for the work-up, and then decide what to do. Maybe that includes getting a second opinion. Maybe surgery is the best next step. But at least you’ll have done the proper evaluation and work-up.
For those who have had prior surgery, maybe been living with disease for some time, and are re-evaluating the possibility of surgery, then it is absolutely imperative to think about the timing. Remember, surgery is a big deal with associated risks. We only like to do it when it can provide the best benefit. In my opinion, if you’re symptomatic and surgery will help, then go for it to relieve the suffering. If there are no symptoms, then how can you maximize the benefit with one single operation? Maybe wait until tumors are even a little larger before surgery? Maybe decide which ones are growing fastest and need to be removed? See, it’s not so simple, so I always encourage people to think about it and make sure you’re comfortable with the decision.
Dr. Eric Liu
Neuroendocrine Surgeon--The Neuroendocrine Institute at Rocky Mountain Cancer Centers
Co-Founder and Chief Medical Advisor Healing NET Foundation
It's hard to believe that another year has gone by. We've helped many of our zebra warriors, but lost some also. For those we've lost, I want their families and loved ones to know that the Healing NET Foundation continues to fight for them.
So much has happened this year in our neuroendocrine world. The biggest news was the FDA approval of the NETSPOT 68-Gallium-DOTATATE PET/CT scan for NETS!!!! This accomplishment means a lot to me as I saw the very first one performed in the United States 6 years ago. When I first starting doing the scan and seeing its true power, I couldn't wait until we could share it with all of the neuroendocrine patients here in the United States. A true collaboration between research physicians, the FDA, and Advanced Accelerator Applications (AAA), the approval of NETSPOT will change the way we take care of NETs here in the United States.
We also saw the release of the amazing data on Lutathera, the peptide receptor radionuclide therapy (PRRT) also championed by AAA. Hopefully, when the therapy is approved in 2017 we will able to treat so many more patients. I was incredibly excited when we gave a dose here in Denver last week. I've seen it in action in Europe - it will be a great tool to have here in America.
Another new advance was the release of the data on Telotristat from Lexicon. Telotristat is a medication that specifically blocks the production of serotonin and hopefully can help many people with severe Carcinoid Syndrome. Another great tool to have in the toolbox.
The Healing NET Foundation was also busy at work. We had the first HNF Summit in the Rocky Mountains where the top NET experts in the world could talk and debate about tough topics in NETs. I was blessed to hear the ideas of many brilliant people and hopefully improve the way we think of NETs.
We've made a lot of progress in our little Neuroendocrine world. But 2017 will only be more exciting. With these two new treatments available, we'll be able to help so many more people. I know there's more research going on and even that Oncolytic Virus in Sweden is moving along. Oooo, I just can't wait!
For those of you who have gotten to know me, I always say that we are all warriors in this crusade. Get out there and tell people that we're here. Tell them this disease is real. Tell those newbies they aren't alone. If we work together, others will begin to understand what NETs are and that we need more research, more awareness, and more care.
Have a wonderful, blessed holiday season, and a Happy New Year!
Dr. Eric Liu Neuroendocrine Surgeon--The Neuroendocrine Institute at Rocky Mountain Cancer Centers Co-Founder and Chief Medical Advisor Healing NET Foundation
As we turn the corner on 2016 and look to 2017 with hope and anticipation, I think it’s important to first say THANK YOU. Healing NET Foundation began three years ago with a vision and dream to think globally about how a physician and patient together could make a difference in the lives of NET patients and their caregivers. Our collective frustration at the lack of knowledge and resources among community physicians, and the possibilities of what technology available in Europe could bring to the U. S. were huge motivators. However, the vision and dreams could not have developed if not for friends and colleagues who believed in the Healing NET Foundation mission, the collaboration with other NET patient advocacy groups and expert physicians and health care professions, and without YOUR support. THANK you for the donations, the sharing of information, and the kind words that keep us going.
Dr. Liu has shared a perspective of where the NET community has come in the last year. I want to add to that from my perspective of both patient and Executive Director of Healing NET Foundation, and also introduce you to some folks who will play key roles in our growth and in our programs for 2017.
Our HNF Board of Directors is made up of patients, caregivers, business men and women, and physicians. They have various reasons why they serve, and I invite you to learn more about them HERE. They all bring different gifts of expertise and experience, but what they all have in common is heart. They want to give back. They want to make a difference.
Each year our Board comes together for a strategy meeting. We evaluate what has been accomplished, and we look at how we can best set up for the future. From our inner workings to the fruits of our labor you see, we put ourselves under the microscope, and we dream. I’d like to share a few insights from our recent session.
Healing NET Foundation has experienced exceptional reach and growth in our three years, and with that comes challenges. As relationships grow, and opportunities present to serve NET patients more, we have to be properly staffed and prepared to take full advantage. There is no time to waste in the NET community. This year we hired an administrative assistant. Several of you met Terrance Lewis this fall at the NCAN conference in New Orleans. He has brought much needed support to the organization; taking care of day to day business including thanking our donors, updating website, and keeping our books in order. As we look to 2017, we see how additional staffing is not a luxury, but a necessity to keep current programs, like the NET Primer and our Insights surveys, growing, and launch new ones.
We are also outgrowing office space, which has been a blessing this past year, as one of our Board members graciously donated in-kind our monthly rent and utilities. What a gift! In 2017, as we add a staff member, we will look for low cost, but appropriate facilities to grow responsibly.
We have set the date for our second HNF Summit, in February 2017. The inaugural Summit, Feb 2016, was an opportunity to see if we could bring together NET physicians from around the world, to discuss the intricacies of this disease. From every discipline, and from many different perspectives, it was a challenge to see if the dialogue could be meaningful and constructive. Wow, we were blown away by the ability of these great minds to debate, think, discuss, and think some more. We saw bridges built, and new collaborations begin. The stage is set for this year to further develop these bridges, and we are adding other health care professionals to the mix. How can the nurse practitioner, and the patient navigator help NET patients travel a complicated medical maze? How can patient advocates all work together to serve the community best?
As we look to 2017 with hope and anticipation, I am struck by the resilience of everyone engaged in this fight for better awareness, education, and care. My family would agree that I’ve always been a bit stubborn. When someone tells me no, I want to know why not. It can be a mixed blessing, but when it comes to surviving NET cancer, it has served me well. I also see that same (let’s call it resilience) quality in the patients I talk with weekly, the physicians and allied health care workers who are so passionate about this work, the folks who have cared and fought for loved ones, and the people who have not been personally touched, but who see a great need, and want to do whatever they can to help exceed it.
Together, we can do this. Thank you.
Cindy Lovelace, Co-Founder and Executive Director, PNET survivor
What does "High-Grade" NETs mean and how does it affect treatment options? NET specialist and surgeon, Dr. Eric Liu, provides some information about the more complicated of the already complicated NET tumors.Read More
Editor Note--It's the end of summer but that green striped summer squash is the vegetable that seems to never stops giving. However, zucchini and other brightly colored veggies might be of particular interest to a "Zebra" fighting cancer through diet. NET surgeon and specialist Dr. Eric Liu shares some nutritional thoughts--
I have particularly STRONG feelings about diet and nutrition. It’s not that there are food that you STRICTLY can or cannot eat. Rather, it’s a whole approach to wellness and the role foods play. The most important thing in my opinion is that you stick to a BALANCED diet. None of these crazy diets where you can only eat apples all day long. You need balance – which means carbs, fats, and protein. Now, there are good and bad types of each, so stick with the good ones when you can. If you are malnourished (which happens a lot with our NETs), then consider the types of food more rich in energy, including fats and proteins.
I’m also a big fan of PHYTONUTRIENTS. Those are the natural nutrients that come from plants. The more red, blue, green, orange, purple, the better in my opinion. Also, remember, lots of plant nutrients are in the skin, so when appropriate think about cleaning them and keeping the skins on (like carrots).
Remember, all these nutritional tips are for you to stay strong and healthy, especially when you are undergoing treatment (surgery, hormones, chemotherapy). If there is a certain type of food that doesn’t agree with you, then DON’T EAT IT. But you can certainly try. Unless specifically told to you by your health care professional, it is rare that foods have some catastrophic effect on your health (except things like grapefruits and certain medicines).
People ask me about “SUGAR” all the time. I say that none of us should really eat processed sugar, but sometimes it is good for our mental health. Heck, anyone who’s been to my office knows that. So in small quantities, it’s still okay. You won’t be “feeding” the tumors with an occasional treat. But cut back on the sodas, processed foods, and other INDUSTRIAL FOOD COMPLEX stuff. As always, consult your health care professional and think about getting a professional nutritionist on your team if this is something that is important to you.
As you all know, NETs are a particularly complicated type of disease. It requires many types of therapies to get the best outcome. And since it is a slow growing, chronic disease, when people are well cared for, they can live better lives. All treatment modalities are important to consider to help treat and prevent complications of the disease.
Surgery is a particularly important modality. Full, disclosure, I’m a surgeon, and have seen the benefits of having surgery and the consequences of NOT having surgery. I use surgery as one of the tools in the toolbox to help people. It can do multiple things: remove tumors, remove hormone producing tumors, remove blockages, remove sources of bleeding, prevent future problems. All these things sound pretty good, right? Well, think about it – if we remove the tumors, that’s the best we can do! If we remove most of the tumors, but can get rid of most of the hormones that are driving you crazy, that’s good too. If the tumor is in a bad place and might cause some kind of blockage (in the bowels or the lungs) we’d like to remove them otherwise you won’t be able to eat or breathe. If the tumor causes bleeding either directly or by clogging blood vessels, it would do well to remove it. And MOST importantly, if we can do the surgery when you are strong and healthy (and not sickly from the complications of the tumors) you will do better, recover better, and be better after surgery.
It’s not SO easy. There are always risks and there’s always a price to pay, but in good EXPERIENCED neuroendocrine hands, these operations can help A LOT. Most of my regrets in the past have been when I DIDN’T do something early on. I’ve learned so much and I hope my experience and knowledge can help others live better lives.
Dr. Eric Liu
Neuroendocrine Surgeon--The Neuroendocrine Institute at Rocky Mountain Cancer Centers
Co-Founder and Chief Medical Advisor Healing NET Foundation
Ugh, ADHESIONS, the bane of all those who practice the art of surgery. They drive the physician crazy and the patient nuts. So what are we talking about here. After any injury or violation of the body, the way it repairs itself is through healing and scarring. We see it all the time when you get a cut on the skin. Sometimes it heals great, but when the injury is bad, it can really scar. The same thing can happen inside after surgery. The body tries to seal things and control things through the scarring process. Unfortunately, when it comes to the intestines, scarring can be a problem. Remember, healthy intestines are very free flowing so they can accommodate your food. When they get scarred down, there are kinks and turns that may make food difficult to pass. We call that a SMALL BOWEL OBSTRUCTION (SBO).
Most of the time, small, partial small bowel obstructions can pass just with time. You might have pain and feel nauseated, but eventually the food works its way through. In severe prolonged attacks, the food may really be stuck and you can’t even pass gas or have a bowel movement. This may require hospitalization, bowel rest, intravenous fluids, possibly a tube through the nose to suck out digestive juices, and even surgery to free the blockage.
But the problem is not just in the intestinse (though that’s how most people feel it). For me, when I do surgery and there are a lot of adhesions, it makes the operation more complicated and dangerous because I need to free the adhesions before doing whatever needs to be done. In experienced hands, freeing up those adhesions (we call it “lysis of adhesions) can be done safely, but it does carry risks. Whenever I do surgery, I try to think about future operations, so I may put down some treatments to reduce adhesions or use some techniques to prevent them. But there’s no guarantee.
Dr. Eric Liu
Neuroendocrine Surgeon, The Neuroendocrine Institute at Rocky Mountain Cancer Centers
Co-Founder and Chief Medical Advisory of The Healing NET Foundation
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.
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
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
Cindy Lovelace HNF Executive Director and PNET survivor
Jeff Gregory, husband to a fellow Zebra, writes a guest post about Dr. Liu's recent continuing medical education program at Albany Medical Center. He writes from the perspective of a caregiver and describes how CME programs impact caregivers and patients in the NET community.Read More
Surgery is a viable and valuable option for many NET patients. How do we weigh the benefits and risks of surgery? Dr. Eric Liu talks frankly about the reality that surgery can have complications, and how important it is to ask questions and be as prepared as possible.Read More