Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
Nausea, bloating, fatigue, and headaches. Five days after my first treatment, a severe headache resulted in me vomiting. I have learned to manage the headaches with Tylenol.
-
Like -
Helpful -
Hug
2 ReactionsWelcome @jahzhang. Can you share a bit more about your NETs journey? What treatments are you having?
-
Like -
Helpful -
Hug
1 ReactionFinally, I had my last PRRT (Lutathera) treatment done on 11/29/2023. After three day side effects (headache, stomach upset, a little bit nausea, less appetite and fatigue), I am doing well now. I can tell my bone pain is getting less, which is a positive result. I will have my pet/ct scan in 8 weeks and followup with my oncologist to decide what would be next.
The attached is my blood test results before each treatment. It seems going down, then stable.
-
Like -
Helpful -
Hug
1 ReactionIt seems the image was not attached to my message. Here is the chart of my blood test results.
___Date____WB Cell (x10E3/uL)___RB Cell (x10E6/uL)____Hemoglobin ( g/dL)
06/02/2023 ..........5.0...............................4.66...................................14.5
07/31/2023............4.1 ...............................4.23...................................13.5
09/26/2023...........3.5...............................4.18....................................13.5
11/24/2023............4.2...............................4.34....................................13.6
Normal range: 3.4 - 10.8...................4.14 - 5.80..........................13.0 - 17.7
-
Like -
Helpful -
Hug
1 ReactionAfter 8 weeks of last PRRT treatment, Ga-68 DOTATATE PET/CT was done on Jan 29, 2024, and next day the report came. So some good news, some bad news, but overall I am getting improved. Waiting for my oncologist appointment next week.
IMPRESSION:
Overall mixed response with decreased size and radiotracer uptake of multiple mediastinal lymph nodes.
Innumerable osseous radiotracer avid metastatic lesions, some of which have decreased metabolic activity compared to prior, and some of which are increased in size and have increased metabolic activity compared to prior.
If clinically indicated, consider a follow-up study to ensure progressive partial resolution of the bone lesions with further increased radiotracer intensity since the prior 3/27/2023.
CHEST PET/CT IMAGES:
- Lungs: The lungs are clear. No pulmonary nodules are seen. Bibasilar atelectasis.
- Lymph nodes: Decreased size and radiotracer uptake of right hilar lymph node (series 4, image 122), with SUV max of 6.9, previously 13.4.
Pretracheal lymph node with SUV max of 2.7 (series 4, image 113), similar to prior. Prevascular lymph node (series 4, image 109), with SUV max of 3.3, previously 4.5.
- Pleural spaces: There are no pleural effusions.
- Mediastinum & Heart: The heart is normal in size. Postsurgical changes of the pericardium. No pericardial effusion.
- Chest wall: No Ga-68 DOTATATE -avid soft tissue mass.
MUSCULOSKELETAL PET/CT IMAGES:
Innumerable osseous radiotracer avid metastatic lesions, many of which have decreased uptake compared to prior.
For example, right scapular lesion with SUV max of 3.1, previously 9.9.
Increased size and radiotracer uptake of left iliac wing metastasis (series 4, image 226), with SUV max of 7.9. Increased size and radiotracer uptake of metastasis in the right aspect of the L4 vertebrae (series 4, image 199), with SUV max of 9.5, previously 8.1.
Glad to hear you're improving overall. How did the appointment go with your oncologist last week?
My oncologist went through my pet report and said my treatment is encouraged. He would like to give me a three-month break and have another pet/ct scan in May. A blood work was done after the visit, which shows my red and white blood cell counts are below normal ranges. That would be another reason to have a break.