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

Hi, I'm new to the group but was reading about the NETs but I've never heard of the shots and was wondering if someone can tell me the name. I had stage 4 neuroendocrine small cell lung cancer which had spread to lymp nodes, plural cavity, liver, with spots in my kidneys, pancreas, and spine. I was given 16 weeks to live 4 years ago. I took chemo, immunotherapy and radiation treatments plus on my own I tried the Joe Tippens protocol, you can Google it. I've done pretty good to still be here but now getting all the symptoms back so would love to know about this shot.

Hi
Can I ask, don’t doctors know you taking anything like the Joe T protocol by blood tests and things?! Also I don’t know whether to take plunge and try it as not started chemo yet! I’m scared. Did you take anything extra or follow particular diet etc?

Hi
Can I ask, don’t doctors know you taking anything like the Joe T protocol by blood tests and things?! Also I don’t know whether to take plunge and try it as not started chemo yet! I’m scared. Did you take anything extra or follow particular diet etc?

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
Thanks for info, it’s the talk of things happening to liver etc that worries me, but then again nothing to lose I guess! I know family docs etc would completely say no to idea aswell. Did you take any extra supplements etc? Vitamins to protect liver or anything else?! What led you to your diagnosis symptoms etc?

@rww1979, Joe Tippens protocol appears again and again in forums and social media. It is important to note that he was participating in an immunotherapy clinical trial at the MD Anderson Cancer Center at the time he began using fenbendazole. Immunotherapy is an advanced form of cancer treatment that boosts the body’s immune system to fight cancer cells. There is not enough data to draw a valid conclusion as to whether it was the immunotherapy clinical trial for his non-small cell lung cancer which is different than neuroendocrine cancer.

The use of fenbendazole for cancer is still experimental (in mice), and more studies are needed to determine its success and safety in humans.

Untested treatments can do harm. When we read repeated stories of success about this or other unproven treatments that circulate widely, the repetition can give the appearance of - it must be true or everyone is doing it.

As stageivsurvivor said in another discussion:
“ Think carefully as drug/drug and drug/supplement interactions can have consequences. Damage to the liver would mean having to pause chemo. Permanent damage would terminate cancer treatment. Bad decisions can have bad consequences and there might not be a “do-over” moment.”

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community or on social media.