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4 treatment options from my doctor, which one should I start with?
Here is the summary of my situation. I am 63 years man with a history of a chest mass in 2019 found to be a thymic neuroendocrine tumor (atypical carcinoid, 10 x 10 cm) with invasion into the pericardium. I was initially treated with thymectomy, and did well until recently when metastatic Dotatate avid disease was found in the mediastinum, anterior right hilum and extensively in the bones. A CT guided biopsy of an iliac bone lesion was consistent with metastatic, well-differentiated neuroendocrine tumor (WHO grade 2). I have been treated for 5 courses of radiation to the right scapula and the C2 vertebral body through early May 2, 2023.
Unfortunately, I was told that with thymic NETs I am ineligible for the clinical trial study.
My doctor has proposed 4 treatment options for my consideration,
Option 1. To start octreotide injections and repeat a dotatate PET scan in 3 months;
Option 2. Everolimus, this medicine is approved for carcinoid but probably has the most side effects of the options;
Option 3. Chemotherapy with temozolomide and capecitabine which is a standard option for GI carcinoid tumors and can be used for thymic;
Option 4. Lutathera as a standard therapy if my insurance would give a prior authorization.
Any comment or experience about treatments would be greatly appreciated.
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I was diagnosed December 28th, 2024. I was having chronic pain on my left side. Went to the ER because I thought my diverticulitis was back. Boy was I surprised. I live in a rural area of Nothern California, near Chico. I was refered to a Neuroendocrine Oncologist at Stanford and my care and my team at Stanford have been amazing!
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3 ReactionsI started cap/tem in April of 2024, one of a bone nets in my shoulder has disappeared, the other 4 are stable and have had some shrinkage.
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2 Reactions@cgshields1129
From your post, it sounds as if you did not have any breathing problems, only chronic left-sided pain. Is my understanding correct?
Has your team discussed with you what type of ablation they will use?
Lutathera infusion therapy was my choice. My NET tumors showed great response after 4 sessions (6mo). There were no il-effects from the treatments except fatigue. I went to City of Hope for 2nd opinion from NET Specialist which treatment would be most effective for me. I learned that the Cancer Centers have best imaging and radiologist report for scans. I chose PRRT after my research and consultation with CoHope NET Oncoligist but really relieved this choice was non-invasive, minimal risk of complications, and good tumor response.