Anyone with lung neuroendocrine tumor experienced significant weight?

@pantfan I don't have a lung neuroendocrine tumor. I have a pancreatic NET that has spread primarily to my liver and bones. I do have experience with nausea, fatigue, body aches, loss of appetite, significant weight loss, and cachexia... also known as wasting syndrome. Here are the basics of cachexia:
-Unintentional weight loss: Losing 5% to 10% or more of body weight in less than 6 months.
-Muscle atrophy: Significant loss of strength, lean body mass, and function.
-Systemic symptoms: Fatigue, chronic weakness, appetite loss, and low-grade fever.
I understand your concern. I know this journey well. Though uncommon with lung NETs, I have learned that these symptoms can still happen. Have any of your scans/MRIs been done below your chest? I read that you were researching a NET specialist. Were you able to find one yet? Here is a link for the Neuroendocrine Tumor Research Foundation's search tool for NET Specialist doctors: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

@tomrennie I have been seeing my gastroenterologist and had endoscopy, colonoscopy, abdominal CT, MRCP, ERCP and HIDA scan, all negative. I attempted a DOTATATE scan but had allergic reaction to the nuclear dye and did not complete the test.
I do believe I have cachexia. I do not have any fever but I have the rest of the symptoms. I have lost 10% of my body weight the past 6 months.
I am in the process of scheduling an appointment with Dr. Wolin at Mount Sinai.
He is a NET specialist doctor.
What was your experience with the weight loss? Have you been able to regain any of it? I have been meeting with a nutritionist who had many recommendations however I continue to lose weight due to the nausea and no appetite. Food just does not appeal to me.

@tomrennie Actually, I did forget one detail. They found a 1cm polyp in my gallbladder. First they suggested gallbladder removal but I saw a hepato-billiary oncologist who said he has never heard of a neuroendocrine tumor of the gallbladder.

@pantfan I lost over 100 pounds prior to diagnosis and during the first few months of treatment. I know that I lost more, but I was afraid to get on the scale for a long time. Unfortunately, the dotatate scan is what my oncologist uses to monitor my cancer. I wonder what @californiazebra uses for her monitoring? I recall her saying that her body doesn't show the contrast. I know that you have had a lot of tests and scans, but not wanting food and the associated weight loss is a concern. A person can't live like that long term. Even the smell of food made me nauseated. Ever have that happen? I primarily survived on fruit protein smoothies. My PNET was over 8cm. I also had innumerable liver lesions with the largest over 8cm. They also blocked veins, so my body wasn't digesting food properly. It took a few months of chemo to shrink everything to allow my body to absorb nutrients again. Once that happened, my appetite returned with weight gain.

@pantfan The gallbladder has neuroendocrine cells, so it can have NETs. I know someone here that had her gallbladder removed as part of a PNET surgery.

@tomrennie
8cm, wow. Sorry you went through all that. Since I don’t have the somatostatin receptors, DOTATATE doesn’t work for me but we can see 50+ nodules and the issues they cause on a chest CT with contrast so I have that every 6 months. DOTATATE if it worked for me might show some other modules we don’t know about but hopefully there aren’t any others. As far as we know my NETs is still confined to my lungs.

When I started octreotide it suppressed my appetite and I lost 5 pounds a month for 6 months but oddly I then gained back 5 pounds a month for 6 months and then stayed stable. I was basically eating the same amount of calories that whole year. I didn’t have weight loss of or appetite issues prior to octreotide.

@tomrennie Thank you for sharing. I'm sorry you had to go through all that and happy to hear you are doing better and have regained your weight. I wonder did you have nausea from the chemo? The smell and even thinking of food and eating makes me nauseous. I agree with you, neuroendicrine cells are also found in the gallbladder, although my oncologist says a gallbladder is a very unlikely place for a NET. My gallbladder polyp did not light up on the PET scan. I just had a follow up MRI which showed no changes, so oncologist said I don't need to do anything and should focus on my lung NET first. The nausea is unbarable, I have it all day, regardless if I eat or not. I only get relief when I sleep. I do cry a lot, as I also have terrible fatigue, weakness, and joint and muscle pain. I'm unable to work or function at home. The only thing that sometimes works for my nausea is dramamine. I can not tolerate zofran. The protein shakes do help when I can not swallow any food at all.
I hope I can see a NET specialist soon and get some answers. I also have hyperparathyroidsm which is an endocrine condition and could be causing my symptoms. No doctor has been able to put all my issues together. In the meantime, I continue to lose weight. Although my BMI is still within healthy range (I was overweight a year ago), the continued nausea and weight loss, and feeling unwell is very worrisome.

@pantfan I still get some nausea from the chemo, but it is a different kind of nausea. I don't know how else to describe it. Chemo nausea is annoying. I did take Zofran during my initial chemo cocktail of capecitabine and temozolomide. They, especially the temozolomide, made me nauseous and vomit. Now, I just take capecitabine. The nausea is tolerable. But the nausea that causes a lack of appetite is crippling. You described it well. It is extremely rare for gallbladder NETs, but like I previously typed, I have met someone here that had them spread to their gallbladder. It happens. I don't know anything about hyperparathyroidism, so I will take your word for it. But, I do know what it is like to feel like you. It is horrible. I know NETs caused me to feel that way. I sure hope that the NETs specialist can put the pieces of your puzzle together, so you can have a complete picture of what you are dealing with. Physically, mentally, and emotionally, you need a positive light at the end of the tunnel that isn't an oncoming train. It seems that train has already hit you a few times. I still cry. You have to let that anger, frustration, utter helplessness, and all of the other emotions that come with how you feel, out. I believe crying soothes the soul. I do want to encourage you to have your questions prepared prior to each doctor's appointment, if you aren't doing that already. Is that something that you currently do?

I lost about 30 pounds as well before my diagnosis. Since my lung metatasized to my liver I am still losing and I am not able to gain. I force myself to eat and drink protein shakes to get nutrients. Cancer causes weight loss and it's so important to keep a healthy weight. Good luck to you. May I suggest coffee chocolate chip ice cream it helped me.

@aprils1957 Sorry to hear that you are still losing weight. If I recall correctly, you were scheduled for a liver debulking surgery? There were concerns about vein involvement. Did the surgery ever happen?