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.

lastround | @lastround | Jul 21, 2023

It great your doctor reviewed the options you have, but the doctor wants you to choose? Are you an oncologist? If not you may want a second or third opinion. This isn’t a game show you get to pick from door 1,2 or 3.
Pin the doctor down on what he/she is recommending. Sounds like they’re covering their butt to shift blame if the treatment isn’t effective. “Well, this is the treatment you wanted” I can hear it now.
My NET is an Insulinoma, pancreas to liver and was told by my doctor at a world renowned hospital last August, “don’t worry, organ failure is painless”.
That was my second hospital and my last visit with that doctor.
Hospital 3, world renowned, across the street, started me on chemo treatments immediately and octreotide shot once a month and I’m still here!
Tumors reduced and living relatively normal life,
My point is if what you’re hearing doesn’t sound right trust your gut, get another opinion. MOST Importantly make sure the doctor is an NET specialist. It makes a huge difference.
Good luck

sandy23 | @sandy23 | Jul 21, 2023

In reply to @alisonn "How was his liver debulking surgery? How long ago was it? What grade is he and..." + (show)

My hubs was diagnosed in 2019 with an intestinal blockage. Surgery revealed he had the NET that originated in his intestines with an outside lymph node that was positive. After a dotatate pet scan it revealed it had Metairie to the liver. Stage 4. He was stable with the Octreatide (Sandostatin) shot until Oct of 2022 pet scan. That showed that the tumors had grown and spread in the liver. Surgery for the liver was in Feb of 2023. Of the 9 samples, 7 plus the gallbladder bladder were positive for cancer. He removed the gallbladder and then it was discussed and decided to start the Lutathera treatment. This was to get him back on a stable basis with just the shot. He has only had 1 treatment of 4. Then we wait for months after that to do another scan to see if that worked. Praying it does.

alisonn | @alisonn | Jul 21, 2023

I pray it does as well. Thinking of you. This is a horrible journey to go through for the patients as well as their families.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 21, 2023

In reply to @sandy23 "My hubs was diagnosed in 2019 with an intestinal blockage. Surgery revealed he had the NET..." + (show)

@sandy23,

From what I understand, your husband has had one Lutathera treatment. Then a scan will be done to see if he has stabilized. Is that the case?

How long do you have to wait until the scan is done? Is it scheduled already? Wishing you patience as you go through this process.

Keep in touch!

sandy23 | @sandy23 | Jul 22, 2023

In reply to @hopeful33250 "@sandy23, From what I understand, your husband has had one Lutathera treatment. Then a scan will..." + (show)

His last treatment is in Dec. The scan won't be don't until next year sometime. Possibly 4 to 6 months out from last treatment. So, April to June of next year. Maybe later. With only one treatment and having 3 more to go thru anything can happen between now and then. This treatment can affect many different things that could lower the amount of radiation or cancel the treatment all together. I'm hoping that won't happen. He went to the dr this week for his Octreatide shot (he gets it in between the Lutathera) and the labs all looked good. Yay! Next treatment is in 4 weeks. Just praying this all works well and he gets back to just the shot with no ill affects from the Lutathera.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 22, 2023

In reply to @sandy23 "His last treatment is in Dec. The scan won't be don't until next year sometime. Possibly..." + (show)

Thanks for clarifying the treatment plan, @sandy23. You must have both been pleased that his last lab results were good. I hope that his next treatment also goes well for him.

Keep posting updates and questions as they come to you. I know that this is quite a journey that is best shared with others on the same path!

Teresa, Volunteer Mentor | @hopeful33250 | Jul 22, 2023

In reply to @qmf "Thank you so much for posting your experience! Very helpful." + (show)

Hello @qmf,

As it's been a while since you last posted, I was wondering how you are doing. Will you post an update when it's convenient for you?

jahzhang | @jahzhang | Sep 28, 2023

Hi, Jul,
I have exactly same disease you have, any updates from your treatment? What drugs do you use?

jlu | @jlu | Sep 28, 2023

In reply to @jahzhang "Hi, Jul, I have exactly same disease you have, any updates from your treatment? What drugs..." + (show)

Sorry to hear about that. I just had my 3rd Lutathera (Lu-177 oxodotreotide) therapy today. Other than that, I haven't used any other medicines. To me it seems the treatment has taken an effect, which has been reducing my bone pain.

snowflake0731 | @snowflake0731 | Sep 29, 2023

My husband has been diagnosed with mixed esophagus adenocarcinoma and neuroendocrine carcinoma, since it’s a rare cancer would appreciate suggestions as far as treatment.