Just diagnosed: Metastatic NETs. Treatment?

@helloitsme I had my pre chemo visit at Mayo Phoenix yesterday.
Had some blood work done and reviewed the results with one of my NET specialist oncologist doctors. I am healthy enough to start my 9th cycle of CAPTEM chemo today. Yay!

I was diagnosed with stage 4 NET pancreatic cancer that spread to my liver on August 22nd 2022. The diagnosis was terrifying. I had been getting progressively sicker for over 2 years before that. The NET tumors were blocking my pancreas and liver from functioning properly. I am 57, 5'10", diabetic, and went from 280 pounds to 140 pounds. Now, those tumors are half their original size. The over 200 lesions on my liver have stabilized or shrunk. My diabetes isn't really an issue anymore. My wife and I just went for a three mile hike. I am a healthy 175 pounds. My one NET specialist oncologist, I actually have 2... yes 2, recently told me that she didn't think that I was going to make it when we first met. That is how close we've become. Complete honesty. She is family. My wife eventually told me that she felt the same way too. But, the NETs and my Mayo care team, really saved my life. It is inoperable. So what. The chemo can still make me feel crappy. So what. It is only a couple of days. And, I won't have to take it every month forever. I was so scared and sick when my cancer journey began. My Mayo care team, led by the amazing Dr. Sonbol, have taught me so much. What makes them so special, they listen. They care. They are human. After Dr. Sonbol told my wife and I the diagnosis, he was telling us "our" options and things "we" might do. I asked him to dumb it down for me. He was using words that I didn't understand. I also told him that I learn best with pictures. He pulled out a blank piece of paper, drew a picture of what was going on, explained it, then showed us the scans and related them to his picture. It started to make sense.

Please lean on me for help. Lean on the support team here. Covid delayed my diagnosis and treatment. You were smart enough to get the PET scan. You are so far ahead of where most of us start. Please, please, please relax. At least try.

Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is rare, it's typically better to have NETs than the more common types of cancer. NETs is often a more of a chronic and treatable cancer. I take octreotide for my lung NETs/DIPNECH and it's very similar to lanreotide. I get one injection in the upper glute every four weeks. No big deal. I started taking two other meds for breast cancer two months earlier so it's hard for me to assign side effects to each med, but I can tell you that I've stayed on all three meds for over two years now. Well worth it. My side effects that I believe were added or got worse when I added octreotide were fatigue, some hair thinning (but not baldness), elevated blood sugar (treatable), lowered blood pressure and heart rate (treatable). Even with all three meds, I still have good quality of life and am not complaining. Octreotide greatly improved my respiratory issues.

I suggest the website http://www.LACNETS.org for lots of info on NETS including presentation videos from lots of NETS specialists. When you attend their live presentations through youtube you can also ask questions. It's not a treatment facility, but a large NETS support organization. Best of luck to you.

@helloitsme It is nice to see so many comments to you! Congrats for choosing Mayo Phoenix for treatment! I was diagnosed with mets to liver from an unknown primary neuroendocrine tumor is January 2021. I also live in Texas but have been going to Mayo Phoenix. The NETS team there is wonderful--Dr. Sonbol is amazing! I've been receiving lanreotide injections since 2021 with few and tolerable side effects. I have also undergone PRRT treatments which significantly shrunk the tumors on the liver. I now receive my lanreotide monthly injections at my local Texas Oncology, but do my scans at Mayo with Dr. Sonbol coordinating with my local oncologist and leading my care team. The Connect group and the first Thursday of the month Zoom meetings will provide you with support and lots of information too. Stay positive, you are making good decisions!

@helloitsme I had my pre chemo visit at Mayo Phoenix yesterday.
Had some blood work done and reviewed the results with one of my NET specialist oncologist doctors. I am healthy enough to start my 9th cycle of CAPTEM chemo today. Yay!

I was diagnosed with stage 4 NET pancreatic cancer that spread to my liver on August 22nd 2022. The diagnosis was terrifying. I had been getting progressively sicker for over 2 years before that. The NET tumors were blocking my pancreas and liver from functioning properly. I am 57, 5'10", diabetic, and went from 280 pounds to 140 pounds. Now, those tumors are half their original size. The over 200 lesions on my liver have stabilized or shrunk. My diabetes isn't really an issue anymore. My wife and I just went for a three mile hike. I am a healthy 175 pounds. My one NET specialist oncologist, I actually have 2... yes 2, recently told me that she didn't think that I was going to make it when we first met. That is how close we've become. Complete honesty. She is family. My wife eventually told me that she felt the same way too. But, the NETs and my Mayo care team, really saved my life. It is inoperable. So what. The chemo can still make me feel crappy. So what. It is only a couple of days. And, I won't have to take it every month forever. I was so scared and sick when my cancer journey began. My Mayo care team, led by the amazing Dr. Sonbol, have taught me so much. What makes them so special, they listen. They care. They are human. After Dr. Sonbol told my wife and I the diagnosis, he was telling us "our" options and things "we" might do. I asked him to dumb it down for me. He was using words that I didn't understand. I also told him that I learn best with pictures. He pulled out a blank piece of paper, drew a picture of what was going on, explained it, then showed us the scans and related them to his picture. It started to make sense.

Please lean on me for help. Lean on the support team here. Covid delayed my diagnosis and treatment. You were smart enough to get the PET scan. You are so far ahead of where most of us start. Please, please, please relax. At least try.

Your story is amazing, and I am so happy for you! I love hearing stories like yours that really give me hope and calm my nerves a bit. I have heard that Dr Sonbol is a wonderful guy. And yes, I believe that I will have to ask him to dumb it down for me, too. This medical speak is spinning my head! :-D. Good luck and continued good health to you. Keep up the good fight!

I just had my what has become a yearly as opposed to every three to six month scan of my lungs and body cavity with a CAT scan and MRI. I am starting my 21st year with NETs and things are remarkably stable with no growth or spread from my liver, mesentery and heart. I take a monthly injection of Octreotide.
I am a strong advocate of dietary restrictions. That means low calorie intake, essentially a plant based diet with a modicum of fish or chicken (as an example only a third of a can of salmon each day), almost total elimination of sugar from my diet such as in candy, ice cream and so many products too numerous to mention. Before I buy any product I look for its sugar content which eliminates the majority of packaged foods and almost every beverage that is out their like fruit juices and soft drinks. I rarely eat out, not knowing what is in the food.
Cancer needs food to grow and much more than normal cells. Logic tells you not to feed it. My cancers which are in inoperable places for the most part, remain, but have been seemingly dormant for years. I am now almost 77 years old. I cannot prove the efficacy of my approach but I believe in it. Of course it takes a lot of discipline and sacrifice of things we used to enjoy in eating but I function very well walking three miles a day with large dogs. The reality is that we need so much less food and calories than most of us get and besides keeping one's weight down is healthier. I don't mean to preach and actually abhor it but once again I do believe in reaching out to those I know are suffering while I seem to be skating relatively through this health crisis.

My husband was diagnosed with NETs 5 years ago, had surgery and had been followed every 3 months. His latest PET scan in October showed new activity and a single leision on his liver. No symptoms of any significance. Started Lanreotide in November and worried about side effects. But we've been happy to discover the shots have been easy. Had some weird joint aches about 2 weeks after the shot the first 3 times, but since then he feels like the only possible side effect had been an increase in gas. Nothing tough to live with. He's about to get his next PET and we are hoping and praying for a good result! Hope all goes well with you!

Welcome to the NET site! Hope you find the group helpful and supportive. I don’t have your exact diagnosis but do have metastatic insulinomas (which are a type of NET)- pancreas and liver - currently surgery is not an option - I am on octreotide which is similar to Lanreotide. I have been on Lanreotide in the past - unfortunately, I had an allergic reaction and had to stop taking it but was on it for about 8 months. The side effects are not bad, at least for me - more annoying than anything. Some mild nausea and GI side effects. My oncologist gave me a prescription for zofran to have in the event of nausea. I only experienced nausea the first day or 2 and then it would resolve. I wish you the best in you journey! Again, welcome to the group!