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

I was diagnosed several years ago and I have refused the shots to this point. I don't have the symptomology other than Asthma like symptoms that I manage. They sound painful and have side effects besides, how does any one afford them? I am sure I will have to submit sooner or later...

I get the lanreotide injection every three weeks. I have GPNET grade 2 resection from small intestine 2019 with Net metastasized ovaries removed in 2023 and stable metastasis to liver. My best living with NET advice is stop eating sugar. The cancer or the treatments or both mess with your bodies ability to process sugar and the non alcoholic mocktails are all corn syrup so avoiding all liquor just had me putting in more sugar my body I was not able to process correctly. I was so puffy and swollen. Now I’m on januvia diabetes meds cut out cake candy pop and very minimally use sugar / corn syrup . I am down 40 lbs just from diet changes. Swelling is gone. I’m still struggling with severe fatigue but am having parathyroid removed next month for normo calcemic hyperparathyroidism and hoping that will help with the severe fatigue bone pain and short term memory issues. This is a process feel it find it treat it watch it remove it repeat. Repeat repeat and repeat. If your anywhere in the process your on the right track just stay positive and don’t let finding new spots be a negative but a positive. Now you know what to watch. Blessed we have the monthly shot it slows down the liver nets growth for me but not the ovarian net. That’s ok they are all different and all need a different plan. Plan for lots of plans it is not bad news finding more it is good news because now your watching. My first thoughts with initial diagnosis was get it out get it out. get it out was all I could think but now 5 years in I understand the process and am at peace with it and thankful and blessed.

Love your positive and focused mindset - makes a great deal of sense to be seeking versus avoiding. My MENS1 began with kidney stones and parathyroid removal (x3) the last one was taken from the neck area and placed in my left forearm - very cool huh? Kept an eye on the Ca levels and Pth levels and low and behold they found NETS not only parathyroid but pituitary then pancreas lesions.... removal of all the offending organs (pancreas, gall bladder and spleen) I and my pump/CGM system are rather care free. PET scan last month found a NET carcinoid so the beat goes on.

I take Lanreotide and as far as I know no side effects after almost 2 yrs on it. I did stop taking it one month because it did not appear to help me. My tumors kept growing and spreading so they switched me to CapTem. However a couple weeks after missing that one shot I started having heart rate issues. After a slew of heart tests it was determined likely caused by my cancer. Started taking it again and sure enough back to normal. So even though it did not slow the growth, it does manage my Carcinoid Syndrome caused by the tumor load.

Lungs, inoperable, recent chest x ray picked up something on thyroid. I will have a Pet on Monday and see where it goes.

Hi, I was in middle of this and my msg just disappeared..lol but anyway, no my doctors didn't know and thinking back I wouldn't recommend anyone being as stupid as I was and not inform your doctor. But in my case I wasn't given any hope only weeks to live. I was diagnosed with neuroendocrine small cell lung cancer, spread to my lymph nodes, liver, plural cavity, i had spots in my kidneys, spine, pancreas and something going on in my intestines. All I did was follow his protocol I never ate any difference so inleas you call cheezits and cokes a diet, I have none. The chemo ruined my teeth and the immunotherapy landed me in the hospital all together about 2 months and while there I caught sometype of infection in my mouth. I can't say the protocol saved me as I was taking chemo and immunotherapy and did some radiation treatments. My tumors never have gone completely away they shrunk and stopped growing and last scan I had I did have a small new one. However they are all very small so I havent needed treatment. That being said i will say that I will start having the hot flashes and sweats even though I keep AC at 65 degrees year round, then I get the same rash I had before being diagnosed and a few other symptoms and I will take 3 or 4 weeks of the protocol and it all subsides. Now is that proof, no maybe coincidences. But it never gave me any side effects and I make sure to do the 3 days on 4 days off and have never taken it more than 3 months. You should know they claim, even my doctor when I ask her, that it can and will harm your liver they also claim it doesn't work. All I know is going on 5 years later I'm still here. I didnt go off Joe Tippens word there was a lady who lived not far from me and they had called in hospice for her, she was really bad. She started it and now 8 years later she is still here. I do think there's something to it of course or I wouldn't take it..but I would never recommend anyone doing anything without discussing with your doctors. I also believe your mental state has a lot to do with healing. I've seen people who once they give up mentally so does their body so please just know the power of God will assist you and help you get through the hard times ahead. I wish you the best of luck. Lol I don't remember if I answered about the diet or nit, another chemo benefit brain fog..lol But if I didn't, no I ate normal.. I craved fish so ate lots of fish but my diet consists of lots of coke and cheezits..lol but there again most people loose weight. But when the immunotherapy gave me ulcerative colitus and I was given mega does of steroids I gained 60 pounds and no it doesn't just come off regardless of what they tell you..lol but through ut all I'm still here and if I were to die tomorrow I've been blessed to have almost 5 extra years to spend with my family and enjoy life..so to me the risk was worth it.🙏

Hi I was diagnosed 2023 both lungs ,I have just joined this group as iv felt very lonely on this journey still trying to understand it all.

Hi Annie
I'm so sorry about your diagnosis. Joining this group will help you to not feel so alone because you're definitely not.
You may want to start a new discussion in the main pnet board with your story and any questions or concerns.. I know you'll get alot of support.
Just briefly to help you, my husband was diagnosed 17 years ago and is still going strong. Hang in there!