Living with Neuroendocrine NETS, any advice?

@hollywood817: Thank you for sharing the info on your clinical study. I am just a patient like you, but here is my read: This Alpha-particle targeted treatment is one of the “hottest” treatments for NETs. Many patients are watching and awaiting results and FDA approval. It hopes to “ZAP” NET tumors to a larger degree than the Beta PRRT that I just had. It is touted to work similarly but has stronger effects on NET cancer cells and for a longer duration. Alpha-particle PRRT could be a game changer… giving us an avenue to “re-set the cancer clock” and give us time to die of old age! I applaud you for being a pioneer of medical progress! I don’t think you will have untoward side effects (with the Beta PRRT Lu177 Lutathera 4 treatments I only dealt with some fatigue) - your positivity will pull you through! Bette

@dbamos1945 Thank you for the kind words. I was excited but had many questions when they initially reviewed the trial with me. The benefits and effects expected from the treatment were pretty astounding...how the alpha aminos do a better job then other treatments at "killing the house cancer lives in without damaging the rest of the neighborhood". They also explained how this treatment will kill the cancer such that it never returns. Dr Gregory Sibley, the head of VCS Fairfax, was as excited as a little kid at Christmas explaining this all to us. He walked us through a number of charts and slides and I was impressed with his approach. More scientific than anything I'd been presented with in the past. He said he expected me to jump at this opportunity (I did) and that it was the next phase in cancer treatment. I feel incredibly fortunate to be selected/allowed to participate in the trial and take my responsibility very seriously. I treat it like its a job and eat healthy, don't drink or smoke, etc. "Hope" is one component of our journey. Positivity, confidence, assisting others new on the trail and perseverance are other components (imo). I'll update here with my status after a review of next week's scans. Stay strong and thank you again for the kind words. - Tom

@hollywood817: Just one more thing…if you are interested there is a great international organization called LACNETS. They offer videos/lectures/virtual meetings and everything regarding NET. There are many renowned specialists affiliated with this group. Lisa and Heather moderate. Best health for you.

@cindypat1 The life expectancy data is flawed. It includes the very old, those diagnosed very late in the cancer life cycle and may include deaths from non-cancer illnesses that can't be separated out from the analysis. When I was first diagnosed it said I had an 11% chance to live 5 years (that was 25 months ago). Both my primary physician and oncologist told me to ignore life expectancy data as everyone's journey is unique. I revive lanreotide every 21 days in addition to the radiation trial I am on for the next several years (have had 2 of the 4 planned infusions, 8 weeks apart). I eat healthy, don't drink alcohol (thank God for gummies) and exercise daily. My advice, stay positive, speak with experts, follow their treatments and programs and enjoy life to the fullest! - Tom

Have you gotten opinions? I was diagnosed some 30 years ago with fatty liver disease. I was told by my doctor not to worry about it lots of people have it. So I did not. Luckily I have not yet had any problems. But recently I have begun to had swelling in my legs which my PCP says is vein related, I will discuss with gastro though. I would like to know if I can reverse this even though I have had it so long. Even my Gastro Dr. now seems unconcerned. He said since I have had it for so long with no problems I probably will not have any now. Im not feeling good about that answer. My BIL was told he had fatty liver disease and cirrhosis at the same time 2 years ago and he is now deceased. FYI I am not overweight and eat low fat, sugar and salt.