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

Taking the shot is literally a pain in the butt! I am like you no more muscle tone! Best tip I got was take all the weight off the foot on the side you are receiving the shot. I find you can never really be ready for it even though you know it’s coming! The person giving the shot matters some are smooth some aren’t. Small price to pay though to control the horrible symptoms. Are you sure they aren’t going too deep I don’t usually have pain afterwards

Sorry to hear this, one question was you neuroendocrine tumor "well differentiated or poor differentiated"? I really hope you can start the PRRT soon, will pray for you.

Hello @ds231 and @sammydj and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. It is a great place to learn from the experiences of others who are walking down this path. As NETs are not like typical cancers, the treatments are also different. As you are both new to this forum, I would like to invite you to attend a virtual NETs support group meeting next Thursday, May 1. Here is a link with information and the Zoom link,
https://connect.mayoclinic.org/comment/1289799/
@ds231
Would you share a little about how your diagnosis of neuroendocrine small cell lung cancer was found. Were you having breathing symptoms or a chronic cough?

@sammydj
How is your dad feeling now that the shots are less effective? Has he had any other treatments for his NETs other than the monthly shots?

I am wondering where your tumors are Liver?

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

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

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

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.

@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

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.