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

Hi,

My name is Cindy. I was just diagnosed with Grade 2 Stage 4 NET in my liver. From my biopsy they’re thinking it might have started in the midgut. I go to Mayo in February for more testing and to find out about any treatments. My liver mass is large, over 6 cm. The waiting is so hard. I am feeling good right now but, of course, you never know how long that will last. My husband has ALS and I need to be here to take care of him as he progresses. Everything I read online doesn’t give a good life expectancy. Helps to hear what other people are experiencing.

Hello @amygirl,

The question about fatty liver and NETs is something that your doctor could best answer. On Mayo Clinic's website there is some information about Nonalcoholic Fatty Liver Disease, Here is the link to that information,
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
On Mayo Connect, we have several members who have discussed fatty liver. Here is a link to those discussions,
--Has anyone reversed fatty liver?
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567
Has your doctor given you any information on healthy eating habits for fatty liver disease?

@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

Thought I would give an update. I just made several trips to Mayo in Rochester. I already knew about the large NET in the liver and after a CT and Dotatate Pet scan they found the primary in the small bowel. It also involves at least 1 lymph node. The liver NET was in the left node and it looks like there are a couple of small ones in the right lobe. After talking to the oncologist and surgeon I decided to go with the surgery over the lanreotide injections. The surgeon said I was a good candidate for the surgery and they should be able to remove most of it. They will remove the liver left lobe, scoop out or burn the small ones in the right lobe, the primary and lymph node in small bowel and anything other ones they find there. Said it should be good results. I will always live with cancer but it won’t kill me. I have the surgery April 8th. I’m feeling more positive than I did before.

Thought I would give an update. I just made several trips to Mayo in Rochester. I already knew about the large NET in the liver and after a CT and Dotatate Pet scan they found the primary in the small bowel. It also involves at least 1 lymph node. The liver NET was in the left node and it looks like there are a couple of small ones in the right lobe. After talking to the oncologist and surgeon I decided to go with the surgery over the lanreotide injections. The surgeon said I was a good candidate for the surgery and they should be able to remove most of it. They will remove the liver left lobe, scoop out or burn the small ones in the right lobe, the primary and lymph node in small bowel and anything other ones they find there. Said it should be good results. I will always live with cancer but it won’t kill me. I have the surgery April 8th. I’m feeling more positive than I did before.

Thought I would give an update. I just made several trips to Mayo in Rochester. I already knew about the large NET in the liver and after a CT and Dotatate Pet scan they found the primary in the small bowel. It also involves at least 1 lymph node. The liver NET was in the left node and it looks like there are a couple of small ones in the right lobe. After talking to the oncologist and surgeon I decided to go with the surgery over the lanreotide injections. The surgeon said I was a good candidate for the surgery and they should be able to remove most of it. They will remove the liver left lobe, scoop out or burn the small ones in the right lobe, the primary and lymph node in small bowel and anything other ones they find there. Said it should be good results. I will always live with cancer but it won’t kill me. I have the surgery April 8th. I’m feeling more positive than I did before.

Oops! They will also remove the gall bladder.