Any one with Neuroendocrine tumors getting the shot once a month?
I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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?
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
Me, too. Diagnosed 01/2023. Still alive on Somatuline Depot. Very few side affects. An occasionally a lump at the injection site if we don't let it sit at room temperature for an hour before. Some diarrhea 24-48hrs following is all. I find that I can't do intense physical workouts the same day after the injection or I get flushed. I'm 57 and workout 6 days a week.
Me, too💜🦓. Diagnosed in 12/22. Still alive on Somatouline/Lanreotide
45
How old are you?
@rww1979, I get the "when all else fails and you have limited time" sentiment. I really do.
I'll add one last piece as food for thought. Where there is hope, there may also by hype. Like you, I would worry about the unknown negative consequences of an unproven therapy. When there is limited time, I want that time to be as good as it can be without unnecessary suffering. Best ending with my family.
For all:
Here's a clear and well-written article about repurposed drugs being researched for cancer.
- Separating fact from fiction: repurposed drugs in cancer treatment https://www.anticancerfund.org/en/blog/separating-fact-fiction-repurposed-drugs-cancer-treatment
It starts out along the same lines as @tomrennie stated about seeking care from a medical professional.
Excerpt
"Mel Gibson may be a great actor, but when it comes to his recent podcast discussion about ivermectin and fenbendazole, suggesting these antiparasitic drugs cured stage IV cancer in some of his friends, it's important to be cautious. The media attention sparked by his statement as well as some recent seemingly scientific publications, making bold claims on the topic, have caused a surge in questions from patients about repurposed drugs."
Understandably, patients want to know if these medications are safe to use and could enhance treatment outcomes—possibly extending their lives or even curing them. Read on https://www.anticancerfund.org/en/blog/separating-fact-fiction-repurposed-drugs-cancer-treatment
Hi
I no I completely agree with what you are saying! I’m coming from the angle that if all else has failed and you have limited time left, I can understand why people feel like they nothing to lose if they look at alternative treatments!
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.
I completely hear what you’re saying but when facing something that has very poor prognosis I now understand why people look for alternative treatments as nothing to lose! But will keep these things in mind!
Thanks