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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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Diagnosed in 2019 I’m now 65 have a pancreatic net that metastasis in the liver. Tumor originally 11x5.8 tried Sandostatin tumors grew changed to Lanreotide monthly with Capecitabine 56pills/14 days + 10 pills/5days Temozolomide this combination has worked for me until now Net specialist does not keep patients on this protocol more than 2 years because of bone marrow issues. My bloodwork still looks good. Now it’s suggested to go on Lutathera also called PRRT There are trials available using PRRT would be interested to know if anyone has tried the combinations? Lutathera with triapine or cabozantinib
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3 ReactionsKC,
What protocol will the doctor limit to 2 years? The CAPTEM or the Lanreotide? Thanks.
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1 ReactionCAP/TEM I was on it from 2019-2024 with some breaks, when I had dental work & was on antibiotics also when I had thrush & immune system was low we stopped Tem. For over 1 year & I still had good results small amounts of shrinkage & stable.
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Hug
3 ReactionsI was only on temozolomide for 13 months. Just capecitabine for now and the foreseeable future unless things start growing again.
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1 ReactionA neuroendocrine specialist I see at City of Hope likes to describe cancer treatments as little guns or big guns. I don’t see him regularly like my oncologist but when the pet scans started showing progression I mentioned Lutathera and he shook his head “no”. Why would they use a treatment which he said was a big gun so early in the process when more progression was to be expected. There are other, less toxic, options on the table that can be tried first. Lutathera is usually reserved for advanced cases when almost all other treatments have been exhausted. I’ve been on Sandostatin LAR along with exgeva injections since 2019. The oncologist has stated the next move would be either Temodar or Sutent. Lutathera hasn’t been discussed yet. Thankfully. Btw my diagnosis is Metastatic Sympathetic Paraganglioma
Good Luck & God Bless
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Hug
2 Reactions@sandy23: I began Lutathera infusions in June ‘24 and looking forward to 2nd infusion next week. It was a very difficult decision choosing this treatment but so far so good. The infusion day was nothing bad but insist on the new 2 amino acids to be used before, during and after the radioactive infusion (bc I had NO nausea). The ONLY side effect I have had is being tired, less activity endurance and sleeping a lot. Drs watch blood labs and have option of reducing Lutathera dose or delaying next infusion until blood labs improved. Medicare pays.
Sandy, all your research is correct and I believe there is more chance of destroying net cells and shrinkage of tumors without significant side effects. My goal is quality of life vs. quantity.
I would be happy to share more with the patient if desired. Best days to come…
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1 ReactionYou mentioned Medicare covered your treatment. Was that regular Medicare or Medicare Advantage? The reason I ask is my wife is about to move to one of the them am I’m concerned that Medicare is going to not authorize some of these treatments.
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1 ReactionKeep Original Medicare and get senior supplement health insurance to cover the 20% Medicare doesn’t pay. Referrals and claims have all been paid without question!
Your health and financial abilities are at risk when you sign up for Medicare Advantage. Best to you.
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2 ReactionsI have Medicare and I pay for an extra supplemental insurance that covers the what Medicare hasn’t
The most I have ever paid is $20
I was told by my account not to get the Medicare Advantage in my situation
One thing if Medicare doesn’t cover something the supplemental won’t pay they only pick up the difference
Best wishes
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2 ReactionsHello @kim1965,
Here is a Connect discussion on Medicare Advantage plans. Personally, I will not make the switch to an Advantage plan even though the monthly cost might be lower. I have a supplemental Medicare plan. It's always wise to look carefully at any Medicare plan before making a decision. Sometimes, with the Advantage plans, the insurance company takes more control over patient care.
Here is the link to the Connect discussion on this topic:
--Medicare Advantage
https://connect.mayoclinic.org/discussion/medicare-advantage/?pg=2
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2 Reactions