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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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I was diagnosed at University of Virginia Cancer Center, then consulted Johns Hopkins Cancer Center, Memorial Sloan Kettering Cancer Center for treatment recommendations. Combined all opinions, I started with Lutathera therapy. Everyone is different. I would suggest at least one consultation from other NET experts.
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1 ReactionThank you for your feedback. We are waiting for his oncologist to give us options. His cancer is stage 1.
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1 ReactionHello @snowflake0731 and welcome to the NETs support group on Mayo Connect. I am pleased to see that you are seeking support and encouragement as you begin this NETs journey.
I see that @jlu has already replied to you about her experience. She made an important point about seeing a NET specialist. As this is a rare type of cancer, a general oncologist may not have the specific training and experience in treating NETs. Getting a consultation with a NET specialist early-on in the diagnosis is invaluable. There are good NET specialists at all of the Mayo facilities (here is a link with appointment information http://mayocl.in/1mtmR63). If for any reason you are not able to consult at Mayo, here is a list of NET specialists (world-wide), https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
If you care to share more, please share a bit about how your husband's diagnosis came about. Was he having symptoms that led to scans and a diagnosis? How is he feeling? Will you post again and share as you are able?
Hello @sandy23,
I hope that your husband is still tolerating the Lutathera treatments and feeling well. Will you post an update about his progress when convenient?
,@sandy23, is your husband on clinical trial to be able to go on Lutathera oxodotreotide ( Lutathera + octreotide) ?
Hi Theresa, thank you for the list of NET oncologists.I saw one in my area and will call tomorrow to make an appointment. The oncologist who my husband is seeing presently, told us he has never had a similar case. He’s consulting with MD Andersen to find a treatment plan. As far as how his cancer was discovered was because he was having black stools, called his doctor who told him to go immediately to the ER. He was admitted to the hospital. They realized his hemoglobins were very low, he had an endoscopy and they found a bleeding ulcer. The biopsy revealed cancer cell. The tumor was removed, he had a endoscopic dissection two weeks ago. It was in between the second and third muscosa of the esophagus. He has no symptoms, no trouble swallowing, no reflux and no pain in his stomach. He doesn’t fit the profile of somebody with esophagus cancer. I have given a lot of information to help you understand his case.
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2 ReactionsI so appreciate your update, @snowflake0731. It's good to know that one of the specialists on the list is nearby.
Your comment, "He has no symptoms, no trouble swallowing, no reflux and no pain in his stomach" is very familiar. Most of us with NETs never had symptoms before the diagnosis and it came as a surprise that we actually had a rare form of cancer.
I look forward to hearing from you again. Will you keep posting updates as you are able?
I'm exactly your age and my situation appears to be exactly like yours. But my journey goes back further to 2014 when when a lobotomy was done to remove part of my left lung. Monitored for recurrence for five years. I was told everything was fine.
In about three years ago, CT revealed lessons on nymph nodes, same lung and bone. A follow up pet was done and I was told it came back fine. Another follow up CT and pet done in 2022. I then started getting inconsistent messages from Kaiser doctors. That lead me to UCLA in early 2023 where I was diagnosed with lung NET with metastases to the liver lymph nodes and big bones.
I started with lanreotide injection in April and PRRT in May. So far, I have had 6 injections and 2 PRRT. No scans have been taken so far because the doctors wanted to wait for the DOTATATE scan to be taken after the PRRT cycle is completed in January 2024. However, last week, my medical oncologist ordered CT of the chest, abdomen, and Pelvic with and without contrast. I will have this done on October 20th and see the results within 3 days.
The only relevant comparative test I have done since April is my chromogranin level. It was over 6000 in April 2023. Subsequent results were 2400 June and 1600 in August, the last one. I will get another chromogranin test this month.
My health is generally okay except for the effects of PRRT and lanreotide and rib and back pain. Last week, my doctor recommended we stop the lanreotide injection until I'm done with PRRT. He was concerned about the impact of the two combined on my blood platelets.
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2 ReactionsThat's how we learned the lesson that this kind of rare cancer never ends. At least your CgA level is getting lower indicating you're in good progress. I have had 3 PRRT so far and will have last one in Nov. So far I could tell my right shoulder bone pain is getting less. Good luck and best wishes!
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1 ReactionHello @akpijazz and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum and have posted about your NETs journey.
What side effects have you experienced with the PRRT?