4 treatment options from my doctor, which one should I start with?

Posted by jlu @jlu, May 8, 2023

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.

@kim1965

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.

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Thanks so much for your sharing.

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@elm60

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!

Jump to this post

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.

REPLY

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!

REPLY
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