Patients Neuroendocrine tumor
How are your NETs being treated?
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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 is 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 to help new patients like me learn about the different options we have.
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.
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
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Courtney_J, Community Manager, Carenity US
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.
I am a 71 year old male, I have known about my cancer since the begining of the pandemic, I have carcinoid syndrome of the liver, my liver is now about two or three times the size it was. I had two tumors, the largest was 11.5 cm x 9 cm, the smaller one 3cm. I had the two tumors embolized. The large tumor was very painful, thank goodness for drugs! Then I learned I had many small tumors, so many you could not count them .I started with Everolimus (afinitor)then later with oxterotide LAR, both do a great job of eliminating the side effects of NETs, the Octeotide perhaps a tiny bit better. But they do not stop the tumors. There are studies where they are used together, I have not tried that due to cost and my age. Which say that with one you get 16 months average, l think, with both 27 months. The only one that actually kills the Nets is a procedure called PRRT, where radioactive particles are injected into you and attach to the samosatin positive tumours, the rest are just peed out. It is effective as I had a friend who died a bit ago ( he lived for over 15 years since his cancer was discovered) and he did PRRT. The cost of PRRT is a lot so you need to get on a study or you have a good insurance company. Hope this helps.
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