I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor. Medication at start was HCT 12.5mg/day, Coversyl 2.5mg/day and Crestor 5mg/day.

First I'll start with a bit of my history. My cancer journey started in 2017 when a close family member was diagnosed with Stage 4 lung cancer that had metastasized to the brain and a previous diagnosis of CLL. Because this family member had no symptoms prior, she urged me to get a CT scan. I was a heavy smoker but had quit in 2000. The first CT scan in the fall of 2017 showed scattered ground glass nodules in both lungs .In 2019, the CT scan showed a spot in my left lung.

In Nov of 2019 I had a let upper lobe lobectomy which revealed a stage 1 lung adenocarcinoma. No treatment required. In June of 2021, another spot was detected , this time in the right lung. My lung capacity was good so I had a right upper lobe lobectomy with pathology showing well-differentiated neuroendocrine tumor, Grade 2 (atypical carcinoid) K1-67 at 16.7% and mitotic index 3/mm sq. Tumor size was 1.4cm, LV1 Stage 11B, pT1 b,pN1, MX. At that time I was under surveillance.

Second follow-up CT scan March 2022 showed multiple rounded hypodense liver lesions and 3 small exophytic sub-centimeter lesions on both kidneys. An MRI in April 2022 confirmed multiple enhancing lesions throughout the liver, most likely metastasis from lung carcinoid tumor. First and second biopsy showed benign liver tissue. Tumor markers Chromogranin A=36 normal and 5H11A 83 elevated. PET scan showed multiple metastatic lesions with the largest in the right hepatic lobe of 1.5cm x 1.2cm. multiple bone lesions on bilateral humeri, sternum, spine and pelvis. Previous PET scan in May 2021 prior to lung surgery showed none of this.

Next test was an Octreotide scan which showed diffuse heterogeneity of octreotide activity throughout the liver and distribution on Octreotide outside the liver was within normal limits. Third biopsy confirmed metastatic Neuroendocrine tumor with K1-67 now at 30%.

In July, I started oral Chemo of Capecitabine and Temozolomide on a 28 day cycle. Capecitabine 1500mg, with food twice daily, Temozolomide 380mg for 5 days, on an empty stomach, and Ondansetron 8mg, 1hr before Temozolomide. After the first cycle, my liver enzymes went very high so second cycle was delayed by 1 week. I was also told to quit taking my cholesterol medication. And Temozolomide dose was reduced by 1/2 to 190mg. All through this all, I have had no symptoms. I am tolerating the Chemo with no side effects.

My first follow-up CT scan Oct,2022 showed slight interval progression of liver metastasis. One lesion went from 1.5cm to 1.8cm and another from 1.2cm to 1.5cm. It was decided that I should continue with current dosage of CapTem. Last CT scan Jan.2023 showed everything was stable.

I am now almost done my ninth cycle of Chemotherapy. I am told that my cancer is treatable but not curable. I continue with no side effects from the cancer or the Chemo. I try to keep a very positive attitude and have a marijuana cookie daily that helps me with any anxiety and also helps me sleep really well. I keep reading about people with NETS, that have had it for a very long time before diagnosis. With me, having no activity showing in 2021 scans and it showing in the 2022 scans, does that mean it was detected early, even though it had already metastasized? With having no symptoms, I don't know what to expect. Should I be looking at a different treatment that may cure it? Or should I just be thankful I don't have any side effects. Before Chemo , I was very active, playing pickleball and golfing. Since starting Chemo, I've basically quit group physical activities because of risk of injury and just go to the gym.

I appreciate any info or advice. Until I found this site, I had no idea of all the different treatments or that NETS affected so many people. KEEP POSITIVE!