Any one with Neuroendocrine tumors getting the shot once a month?

How old are you?

If my toilet gets clogged, and I can't fix it, I call a plumber. If I have electrical outlets not working in my home, I call an electrician. If I want to make a garage into a bedroom, I call a contractor. If my body isn't working and I am told that I have cancer, follow a financial consultant's advice? I googled Joe Tippens and found that he is a financial consultant. Why would I follow his advice on cancer treatment? Just like the plumber, electrician, and contractor, I want someone with the most education, training and experience for the job required. When it comes to saving my life, why would I not want the same? I was diagnosed with stage 4 neuroendocrine pancreatic cancer in 8/2022. I was terrified hearing the diagnosis. Instead of studying alternative treatments, I studied the best possible place and team of people to treat me. I wanted the best opportunity to stay alive. So if you believe the Joe Tippens protocol works for you, good for you. It is your life. Do whatever you think is best for you. For me, I will stick with the medical teams with the best education, training and experience for the job. I can't argue with the results. I am still alive.

Hi, I have Landrotide injection every month from August /2022, only skip it when I have Lutathera 177 treatment, which was four treatments from October /22 until March /23.
These injections help me a lot with the diarrhea for carcinoid syndrome and colon resection. But help me with the tumors in the liver

I have been having the monthly injections of Octreatide.
(Sp?) for about a year. It also helped with diarrhea and the hot flashes that were so HOT, HOTMAIL HOT!!
I have some nodes in my liver too and one near my inferior vena cava. These are all staying the same with no growth or new lesions. They won’t do surgery on the nodes in my liver because they are too small. Not sure on the one other one but I suspect for the same reason, too small. My scans have shown no growth on these nodes so I am living with the monthly injections and
“keeping the faith” that nothing is growing either new or current. What does your liver show?

I have been having the monthly injections of Octreatide.
(Sp?) for about a year. It also helped with diarrhea and the hot flashes that were so HOT, HOTMAIL HOT!!
I have some nodes in my liver too and one near my inferior vena cava. These are all staying the same with no growth or new lesions. They won’t do surgery on the nodes in my liver because they are too small. Not sure on the one other one but I suspect for the same reason, too small. My scans have shown no growth on these nodes so I am living with the monthly injections and
“keeping the faith” that nothing is growing either new or current. What does your liver show?

Hello @mballinger51 and welcome to the NETs support group on Mayo Connect. I am so glad that you found this forum and have shared your experience. NETs is a rare cancer disorder and it a good thing to find others who are walking the same path. I am happy to hear that the monthly injections have lessened so many of your symptoms.

As you are new to the group, I look forward to getting to know you. Would you share a little about your diagnosis? For example, how long ago were your diagnosed, were the symptoms that you mentioned the ones that led to the diagnosis?

Yes me. Lanreotide. Have been having for some months now and is horrendous. Am thinking of stopping as sideceffects awful. The actual injection is sooooooooooo painful too. I feel so lethargic like I cannot get out of bed. Cannot do anything as feel so weak.