New NET in liver and small intestine

@djchambers Good luck with the insurance. I know that can be frustrating. I am familiar with capecitabine and temozolomide or CAPTEM for short. I was on it for 13 cycles starting a little over three years ago. They shrunk my pancreatic tumor and liver lesions in half. They also controlled everything in my bones. I have been on a maintenance dose of capecitabine since. It has kept everything stable. Do you have any concerns about them?

Yes. These drugs are covered under Part B. My husband gets them from Mayo's Specialty pharmacy. The pharmacy needs to submit it to your plan B medicare provider. Not your drug plan provider

@lindabees
Thanks! I’ll talk to my dr.

@djchambers I absolutely hate insurance companies, all the red tape & God complex they have! For just once I’d like to trade places with the Dr or staff that sits behind a desk making life decisions for patients they have no clue about just to “follow their guidelines.” I hope your issue is quickly resolved!

Hi, I am a 65-year-old woman. I was having these horrible stomachaches. I finally went to the emergency room. A doctor there said she wanted to look a little a little more so she ordered a CT-Scan. What they found was a carcinoid tumor. It was removed a long with a foot of my small intestine. My oncologist followed me every six months for a couple of years. Then I went to a year because everything was good. In 2021 the CT-Scan showed that it has metastasized to my liver. There were 18 pea size tumors removed and a quarter size one removed. After the surgery I was followed every three months. Things looked good until a CT-Scan showed that it was in my bones, lymph nodes close to the outside of my liver, along with 11 other spots in my body. In February 2025 I started Lanreotide injections. I just had a CT-Scan read to me on Nov. 7th. Everything is shrinking and looking great. I do have headaches, I'm really tired. I have to take naps. Which I never did before. I am having chest pain which is really uncomfortable. So had a echocardiogram done. My heart looks good. Doctor said that it could be inflammation. So has me taking Aleve twice a day for two weeks to see if that helps. I am on Medicare and a Medicare supplement. And a Medicare drug plan. Called silver scripts. I haven't seen a bill for any of my treatments. And my prescriptions have a very little copay. Hope this helps. If you have any more questions for me I will answer them if I can. Wishing you Lots of love! And a great big hug!

I had the same situation as you do. Net tumor went from my small intestine to my liver. I had surgery first on the small intestine. They removed the tumor and a foot of my small intestine. Then it mastitis to my liver. Where they found 18 pea size tumors and 1 quarter sized tumor. They were removed. Everything looked good for a year and a half. Then a CT-Scan showed that it had went to my bones, lymph nodes close to the outside of my liver and 11 other spot in my body. this past February I started Lanreotide treatment. It is a injection and it is given every 28 days. Good news this past CT-Scan showed that the tumors are shrinking. And my oncologist was very pleased. I am having chest pain and headaches. The headaches get better with Advil. But my doctor said he wanted me to take Aleve 2 times a day for two weeks to see if that helps the chest pain. I had a echocardiogram done and it looks good. So he is thinking it could be inflammation. So we will see. As for Insurance. I am on medicare & medicare supplement. I never see a bill. And for my drug plan it is called Silver Scripts. It is wonderful. Copays are really low. Good Luck, lots of love sent your way and a great big hug. One of the best things that help is I swim 4 days a week for a hour. I don't always feel like going but I do. It helps my mental state.

The Norton specialty pharmacy told me both chemo meds are approved at $0 copay. Thank goodness. They told me about lots of possible side effects.
But at least I can get the drugs. The pharmacy is near us and we can pick them up. I start them on Friday after another visit with Dr and labs.

@djchambers I am glad that the medications are covered. The list of possible side effects is extensive. Make sure you review any concerns about them with the doctor on Friday. Let us know how everything goes on Friday ok?

Does anyone have sore lymph nodes? My tonsils and lymph nodes “twinge“ or hurt every day or so. My doctor in Louisville shrugs when I tell him this. Last night I couldn’t sleep because of this “Twinging” type of pain.

@djchambers Is the Dr a specialist? Did he/she examine them? Seems like an odd reaction to a patient’s complaint.