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.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Thanks so much for your sharing.
We can't suggest a treatment, your NET Specialist is source for making the best decision. I can share that my wife NET Multi-disciplinary team started us on CAP/TEM, along with Lanreotide injections for 9 months with achieved great results, the CAP/TEM was tolerated as it was in the pill form, so not as many side effects. But each form of NET's has a different treatment plan, and I would discuss with your NET Specialist what is best in your case.
Hi jul
I am sorry to hear you are going through all this. I don’t have the same NET’s as you but it sounds like you are seeing a NET Oncologist ? What is he/she suggesting? I would suggest a second, or even a third opinion. Mayo Clinic has three locations: Jacksonville, FL, Rochester MN, and Phoenix and Scottsdale , AZ. All locations have great NET Specialists as well. Please let us know what your doctor is suggesting but getting a few opinions can help you make your decision easier!