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.

rose4jim2417 | @rose4jim2417 | Aug 2 12:32pm

In reply to @hopeful33250 "Hello @kim1965, Here is a Connect discussion on Medicare Advantage plans. Personally, I will not make..." + (show)

I totally agree with Teresa regarding Medicare advantage plans. As someone who worked as a Benefits rep for many years before retiring I saw how dangerous some of these plans can be. The monthly contribution is lower, but as Teresa said insurance companies have more control over what treatments you can and cannot have. My husband was diagnosed with stage four Neuroendocrine Tumor cancer in September 2022. We have traditional Medicare and purchased a retiree Blue Cross PPO supplemental plan through my husband’s employer and have had wonderful coverage at U Of M Ann Arbor Michigan. Good luck to you.

flippo | @flippo | Aug 2 12:59pm

I have Medicare and a Supplement for health insurance. I know what my maximum out of pocket is for each year before the year begins. Do your homework, it is an important financial and medical decision. At least talk to a person with knowledge of how supplements work before you make your decision. I am glad I did not choose an Advantage plan.

dbamos1945 | @dbamos1945 | Aug 2 5:00pm

No one likes to pay more for insurance than necessary; however, when we are confronted with any form of cancer we face a catastrophic decision when our best hope of continued quality of life and our insurance co. refuses specialist recommended treatment. Original Medicare is our best bet that we will be given the best chance for life. Yes, the monthly premiums are greater than the many Medicare Advantage plans offered on today’s insurance marketplace, but we never want to be denied prompt health care because our insurance company says no.
Personally I never thought I would be a cancer patient taking very expensive drug treatments, but I am grateful to have resisted the temptation years ago to buy health insurance based on the lower monthly premium.
It is up to you, but think twice!