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

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?

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.🙏

@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.

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?

Thats exactly what I was saying. I tried it after being given 12 weeks and being told there basically was no hope. But it's important to note even after that I would never take more than 3 times per week and even though ppl say oh you should continue it so it doesn't come back there no way I'd continue to take it unless I was once again faced with no hope. Plus as I said no one should ever take my nor anyone else's opinions without doing their own research. As I also said there is no way I could say it worked for me because I was also taking other treatments. But I do know that when my tumors that remain have started to grow I have taken it and they have stopped growing and even shrunk. Then I stop and within a few months I will start symptoms again, but this could be completely coincidental . My late husband passed from ACC cancer and his would also grow and then shrink without treatments over 22 years. I guess it all depends on how your body is fighting, who knows. All that being said when you are faced with no hope you will basically try just about anything if you have loved ones depending on you. I had so many well meaning people giving me all types of miracle cures. I know that aggravates a lot of people but I felt blessed that they cared enough to even think about me. Please everyone, don't take anything I have ir ever will say as something I'm suggesting for anyone else to try. Everyone should do their OWN research on ALL treatments, even the ones your oncologist plan for you as everything you put into your body has some type of adverse effect on other parts of your body. With reduced immune systems and in most cases liver functions you have to go into everything informed. Like I said my immunotherapy put me in hospital with ulcerative colitus. They told me that had I waited 1 more day I would have left in a body bag. But again that was a chance I was willing to take to be able to stay with my family. So now I really feel bad for even mentioning what I took. I hope you all will not just try anything and will not let anything I said influence you. I apologize and please talk with your oncologists.

@ds231, you're right.
Fenbendazole is formulated for veterinary use and can cause irreparable liver damage.
- Liver damage from Fenbendazole https://pubmed.ncbi.nlm.nih.gov/38706451/

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 then 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.

You can read more here:
- Can Antiparasitic Drug Fenbendazole Treat Pancreatic Cancer? https://www.healthline.com/health/pancreatic-cancer/fenbendazole-for-pancreatic-cancer

Yes we've had him since 2018 as a puppy, he's a black golden doodle who looks more poodle than golden..lol Hes very intelligent and can tell me still when I'm going to be sick. Anytime the ulcerative colitis acts up, I know at least a day before symptoms flare because he starts laying his head on my stomach and just acting depressed. I know I'd be dead had it not been for him so pay attention to your best friends they say they can smell as well as sense when you're getting sick.

What a remarkable dog, @ds231! What breed is your dog, have you had him for a long time?

Everyone laughs when I tell how mine was found. We had just ourchased a RV and we're getting ready to hit the road for how ever long we could when my dog started sniffing my breath then laying his head on my chest, he wouldn't leave my side and he did this over and over. I had been really sick, I had somehow caught C-diff and felt pretty bad but was getting better. But afyer days of my dog acting this way I told my husband I'm going to see about my lungs before we take off. My doctor ordered me a CT scan to appease me and 2 hours after I had it they were on the phone saying I needed a PET scan immediately. So that's how my journey started, my dog saved my life. I never did have a cough, but did have pain in the spots where the cancer was found. I just racked it up to old age aches and pains..lol I can say my dog is pampered now more than most..lol

Im not sure. All I know is I had neuroendocrine cancer spread to my liver as well and doctor didn't give me much hope, actually no hope. So while I was taking the chemo and immunotherapy I tried the Tippens protocol and my scans were what my doctor call miraculous, she called me ecstatic she was so happy. I had ask her about the Tippens and she told me nit to take it ut could harm my liver, like chemo didnt, but when you're given 16 weeks, you basically will try anything. My tumors shrunk, some went away completely. Last year I started back with the hot flashes, then the rash and started back gaining weight all just like before so I started the protocol again. The spots were small so no chemo, all symptoms went away and spots shrunk. I stopped the protocol all symptoms are back again. So.. it may be all coincidental but I've started back taking it. I talked to a pharmacist about it and made sure none of my meds had reactions to it and she told me what ut does ut stop the tumors from being able to firm their own blood supplies this starving them basically. So please don't take my word for it as I cant swear it is what helped me, but please do your own research. I just wasn't given much anything else. The strong immunotherapy gave me ulcerative colitus that ended me up in hospital for weeks, then the steroids to help that gave me all kinds of problems which again in hospital for more weeks so the protocol i figured couldnt do worse..lol I went to Moffitt cancer center in Tampa and am seeing a thoracic oncologist, then a GI oncologist for my pancreas, another one for my kidneys heck there's so many different ones I forget who they all are. I just go fir my CTs and they pass them around..lol no one thought I'd be here because it was a high grade and spread pretty fast but something stopped it. I pray for you the best..remember your mental attitude can do wonders and I told her to start with Im not dying right now, Im not ready..she offered to call my kids maybe they could help me accept my fate..now she just says I was right..lol