1. < Neuroendocrine Tumors (NETs)

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.

cgshields1129 | @cgshields1129 | 1 day ago
In reply to @hopeful33250 "Hello @cgshields1129 and welcome to the NETs support group on Mayo Connect. It sounds as if..." + (show)
@hopeful33250

Hello @cgshields1129 and welcome to the NETs support group on Mayo Connect. It sounds as if you are getting some good treatments to deal with the tumors. You must be pleased with the shrinkage in some of the tumors as well as being considered, "stable." I'm glad the side effects from the CAPTEM were minimal.

You might be interested in participating in other NETs discussion groups on Connect. Here are some links to those discussions:
--Typical carcinoid tumor in lungs
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
--NET lung with liver metastasis
https://connect.mayoclinic.org/discussion/net-lung-with-liver-metastasis-stage-4/
--Bland embolization
https://connect.mayoclinic.org/discussion/blan-liver-embolization/
In these discussions, you will meet @californiazebra who has lung NETs, and many members who have metastases to the liver.

How long ago were you diagnosed with NETs? Were you having symptoms of shortness of breath?

Jump to this post

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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cgshields1129 | @cgshields1129 | 1 day ago
In reply to @jlu "Now I am back with some updates. Since Lutathera treatment in 2023, I had 15 fractions..." + (show)
@jlu

Now I am back with some updates. Since Lutathera treatment in 2023, I had 15 fractions of IMRT (Intensity-Modulated Radiation Therapy) to increased paratracheal lymph node in 2024, and 10 fractions palliative RT to my lower lumbar spine/pelvis and the right lateral ribs recently, My recent PET/CT scan showed not enough uptake even all my bone metastasis. My oncologist did not recommend the second Lutathera treatment, instead of CAP/TEM chemo. From what I understand, CAP/TEM (capecitabine and temozolomide) is a chemotherapy combination used to treat neuroendocrine tumors (NETs). It's often used to treat pancreatic and lung NETs, and may also be used for gastrointestinal NETs.

It would be really encouraged and appreciated if there is any positive result from bone metastasis treated by CAP/TEM.

Jump to this post

I 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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 20 hours ago
In reply to @cgshields1129 "I was diagnosed December 28th, 2024. I was having chronic pain on my left side. Went..." + (show)
@cgshields1129

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!

Jump to this post

@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?

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