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

Thank you for your reply I'm here in UK an there are not many support groups in my area,does your husband have lung nets? I haven't met anyone yet with same as me,apparently only 5% of people have it in the lungs.

Hello @annie12345,

I am glad that you found this forum. It will help you find support in your journey with lung NETs. Here is a link to many of the Connect discussion groups where lung NETs are mentioned:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung&pg=2. I would encourage you to read these posts to discover what other lung NET patients are saying about their diagnosis and treatment. I would especially like to invite @californiazebra to post with you, as she has had lung NETs for many years.

What is the most difficult symptom you are dealing with, @annie12345?

The pain is short or not bad if it’s done right! Medicare covers them if you are on it. It seem most people just get fatigued for a few days

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...

Thank you for your reply I'm here in UK an there are not many support groups in my area,does your husband have lung nets? I haven't met anyone yet with same as me,apparently only 5% of people have it in the lungs.

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!

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, 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.🙏

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

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.