Lanreotide Question

Have you had a PET scan by chance? Just wondering how you were diagnosed? Your surgical oncologist was concerned enough with that latest MRI to bring it before the tumor board. Maybe others on the board have prescribed Lanreotide in similar situations? Sometimes I get more info from nurses than doctors.

Lanreotide 120 mg injection’s are treatment for NET patients. I have received them every 28 days since biopsy revealed diagnosis 3 yrs ago. I was told that this drug helps with symptoms and can stabilize tumor growth. I receive the injection in the Oncologist office and Medicare pays.
I hope that you consider the benefits it may offer tumor stability. Best…

Thank you. No, I’ve not had a PET scan. I had symptoms and a CT showed my primary tumor and the liver Mets. I had surgery and do surveillance with the MRI. I appreciate your comment.

Agree!

Hi there, my hubs had had NETS (neoendrocrine tumors) since 2019. I saw the above post were you said you've not had a PET scan yet. A Dotatate PET scan is generally what is done at early diagnosis with yearly follow up. The injection you are referring to us called Lanreotide given every 28 to 30 days. My hubs is on Sandostatin injection given the same way. Going to an Oncologist who is familiar with NETS (neoendrocrine carcinoid tumors) is the key, I feel to keeping on top if this cancer. While it is generally slow growing it can take off and grow and spread esp if initial diagnosis is beyond stage 3. Such as my hubs who's origination is the small intestine and metastastisized to his liver. He's had "debulking" surgery in his liver, which is common and he's had IV radiation with Lutethera. He is now back to being stable again. So the answer to your question as to why your Dr would want you to go to an Ocologist for the monthly injection of Lanreotide or equivalent (i would discuss all injection options with the oncologist) is bc to keep you stable this is the route to go. I'm surprised that wasn't the initial route to begin with but it sounds like you're still on a good path.
Good luck to you and keep us posted.

We 'Zebras' will likely have different reactions to treatments. The Oncologist (specializing in NET's) is the best person (or, in my case, team) to analyze the situation.
I have been on Lanreotide for one and a half years and just recently upped the dose to 180 mg. every 4 weeks. I started at 120 mg. every 4 weeks and then adjusted to 120 mg. every 3 weeks and now the increase of the Lanreotide dosage.
I had introduced 'Lenvima ' 3 months ago, so now taking the two treatments. After 2 bouts of PRRT (which caused liver tumors to grow more) and Histotripsy, which partially shrunk some tumors (available in the U.S., not Canada (and very costly), I am finally somewhat stable. BTW, there is a lot of information online about the treatments and what to expect.
Much of the time, we are test subjects for ourselves, so this is a life project.
My primary was in the sm. bowel and metastasized to my liver, hence Stage 4.
Wishing the best.

Thank you. I’m curious if you had surgery to remove the liver Mets and the primary and then began the Lanreotide? Interesting about the PRRT and growth in your liver. Thanks again.

I had a bout of embolization, but no cutting. The primary has not been touched at all.
I chose to have an MRI (no symptoms) in March of 2023 and surprisingly my doctor called and said I had 2 weeks to live. I was then put through testing..Ultrasound, MRI with contrast dye, Liver biopsy, Dotatoc PET Scan, another PET scan with considerable loss of hair) CT Scan & X-Ray & EKG, CT scan with contrast dye, another CT scan with contrast dye, Bland embolization, CT scan with contrast dye, another CT scan with CD, PRRT x 2, CT scan with CD, Histotripsy, 5 CT scans with dye.

My life so far.........I have suffered through debilitating lethargy (most likely due to the treatments of Lanreotide & Lenvima) Spent most of my time in bed, disinterested in most daily anything, walking was erratic. HOWEVER, now, after 1 and a half years, I am starting to feel (almost) normal. This March 24, I will celebrate living 2 years after this major life change. I have hope as discoveries and trials are becoming more advanced (there are bots in action) as long as there is funding for all. BTW, treatments vary with each individual - I didn't take to the PRRT but others would. Have hope!

I’m delighted to hear you’re on the upswing. That sounds like a lot to go through. Thanks for the information and support. Take good care!

@greenmountainzebra, I'm wondering if you have learned more about the timing of starting treatment from your oncologist. Have you been able to talk to your cancer team for more clarification?