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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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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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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.
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1 ReactionI 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.
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1 ReactionNo 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!
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1 ReactionNow 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.
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1 ReactionHello @jlu,
To meet others with bone mets, I would encourage you to direct your questions to the following discussion group where you will meet others who also have NET bone Mets:
https://connect.mayoclinic.org/discussion/net-in-the-spine/?commentsorder=newest#chv4-comment-stream-header
Here you will meet others such as @vanhauen. who has taken CAP/TEM, @gsm13161 and @kwan.
Are you currently being treated by a NET specialist?
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