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.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I am sorry to hear you are going through all this. I don’t have the same NET’s as you but it sounds like you are seeing a NET Oncologist ? What is he/she suggesting? I would suggest a second, or even a third opinion. Mayo Clinic has three locations: Jacksonville, FL, Rochester MN, and Phoenix and Scottsdale , AZ. All locations have great NET Specialists as well. Please let us know what your doctor is suggesting but getting a few opinions can help you make your decision easier!
We can't suggest a treatment, your NET Specialist is source for making the best decision. I can share that my wife NET Multi-disciplinary team started us on CAP/TEM, along with Lanreotide injections for 9 months with achieved great results, the CAP/TEM was tolerated as it was in the pill form, so not as many side effects. But each form of NET's has a different treatment plan, and I would discuss with your NET Specialist what is best in your case.
Thanks so much for your sharing.
Hi Jlu, first off, wow 10x10cm is a very big tumor. And you have lots going on with your NETs. I am not the patient, however my husband is oddly enough I was just going to post about the Lutathera treatment to see if anyone had gone through it.
Is that your dr have you 4 options but now a days they don't want to make the decision for fear of backlash. Or it could just be the end result will be the same.
My husband is on the shot Sandostatin, long acting…(Octreatide) . I believe this is more of a maintenence drug and is goal is to keep the tumors from growing and spreading. It soars you're beyond that. So I don't know if that's a viable option, however there are very little side affects other than gas and sometimes loose stools or diarrhea within a day or so of the shot. However, it can last longer but very treatable.
. The chemo pill… forgot the name bc I can't see your post… the one with the most side affects, is also given continously. Like with the shot, given monthly, we were told the chemo pill will continue daily indefinitely. So think about that and do more research. My hubs ruled that out bc of the long term, and side affects.
The Lutathera is what we just presented to my husband for his next treatment. I've researched it, watched videos and talked with his oncologist about it. My understanding is is that it's for progressive, generally non operable NET tumors. Not to say "debulking" of the liver isn't so available due surgery….. but this treatment is IV radiation. You receive it every 8 weeks via IV at an infusion center and repeat every 8 weeks for either 4 cycles or 8 depending on the protocol for your specific treatment.
My hubs NETS metastasized into his liver and he just had surgery to remove the tumors, called "debulking". Unfortunately, there was still residual disease and new lesions since surgery 2 months after the surgery. The dr recommended the Lutathera bc it goes through the body, attaches to the receptors of the tumors/lesions and then destroys them. This being a good thing since we all know these NETS can be small and not always seen on CT's, MRI's and even the dotatate Pet Scan. My research has made me come to the conclusion that this treatment is to do the best it can at getting rid of as much cancer as possible, preferably all but that might be a stretch and get my hubs on a stable path again. When he was diagnosed in 2019 it had already metastasized to the liver, originating in his intestines. He was put on the monthly shot of Sandostatin/Octreotide, long lasting and ask was well. He was stable, until Oct of last year when his tumors had started to grow and spread. Surgery of the liver was in Feb and we are now at this crossroads of whether or not he wants the IV radiation. We'll get more clarification tomorrow. I understand the reason why and process and researched it at nauseum. He's a tougher sell. And rightfully so, it's his cancer, his body.
I would suggest you do the same. There are quite a few videos on Utube about NETS and I'm sure you can find one or several that will cover those treatments and possibly even scenarios of people who went "that" route, whichever treatment you're researching. Do your do diligence, research,research and ask questions.
Good luck to you.
Thanks so much for the helpful information. I will meet my oncologist tomorrow to decide my treatment plan and will keep updates here.
Had a discussion with my oncologist. The plan would be Lutathera (IV radiation) as the first choice if approved by the insurance, otherwise will start with chemotherapy with temozolomide and capecitabine. He also asked their radiologist to look at my pet scan and think not all my cancers would respond to Lutathera. It seems my case is so rare.
@jlu I have been on CAPTEM for 9 months with minimal side effects. I have learned this is short hand for the two pill forms of chemo with really long names. They are less now then when I started. My tumors have all shrunk and my lesions have stabilized. I am feeling so much better. You will find all of us here have a very rare type of cancer: NETs. That is why this chat helps so much. We can all have this rare type of cancer together and share what we've learned
I'm curious as to why not all of your cancers would respond to Luathera? I've never heard of anyone having more than one type of cancer at the same time. Generally it originates in one place and then metastasizes to other areas of the body. Could it bc of the location of the NET'S rather than the type? I'm curious, as,my hubs starts the Lutathera next month.
Just curious to see if anyone has had Lutathera (IV radiation) treatment or have been recommended it?
I only have one type of cancer (atypical) spreading multiple bone places. My guess would be cancers in some places may not respond to Luathera. I don't know why. I could ask my Dr for details at next time visit.