How are your NETs being treated?

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Patients Neuroendocrine tumor

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Posted on

Hello,

The purpose of this discussion is to learn about different treatment options Neuroendocrine Cancer patients have. 

I have stage IV, GI Neuroendocrine Cancer. I have several grade 1 tumors ( 2 of them over 4 cms!) in my omentum, small bowel, appendix, liver and right lung. 


I am been treated with Lanreotide injections, 120mg, every 28 days and, so far, it has reduced my carcinoid syndrome symptoms drastically. I’m too early into my treatment to show any other progress (I was diagnosed just 2 months ago) and I am still waiting to get a Dotatate Scan to determine if any of the tumors can be surgically removed or recessed, as well as other treatment options. 


I’ve read about different treatment options, both conventional and alternative, and I am wondering if you will be willing to share your experiences so that new patients like me, can learn about them.

Thank you.

Michel.

Beginning of the discussion - 10/26/21

How are your NETs being treated?

• Community manager
Posted on

Hello Michel, thank you for opening this discussion. That's great that you've started to see some improvement with the lanreotide! Let me tag some other members who can possibly share with you. emoticon cute

Hi everyone, how are you today?

As you know, treatment options for neuroendocrine tumors tend to vary and range from surgery, cancer treatments like radiation and chemotherapy, to targeted drug therapy and more.

What treatments have you undergone for your neuroendocrine tumors? Have they been effective? 
@Dh3510@TerriEngels@mauidennis@JENN723@Beckybarsness@Joonbug@Kurlee@Virginian@kathleenwis@Bhnt1109@Vlinan6971@BarbaraH@Shyro73@Robmac@Hitch55@RBO0813@Cmloretto@Cats22@sgyle1‍ 

Feel free to share with us here!

Take care,
Courtney

How are your NETs being treated?


Posted on

Hello again,

Quick update, I am going for surgery tomorrow morning ( December 14th, 2021 )  Getting a bowel resection and debulking as much as possible, my doctor says they are hoping to be able to remove 70% to 90% of the disease. I wont be Cancer free but I like those numbers!

I'll post another update whenever I can.

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