Living with Neuroendocrine NETS, any advice?

I will go to Mayo next month for more scans and see about where the primary tumor is. Also what the treatment plan will be. The waiting is the worst.

I agree, @cindypat1, waiting is the difficult part of this whole journey. I am glad to know that you will be seen at Mayo. There are NET specialists at Mayo who are excellent. Which Mayo facility will be at?

I look forward to hearing from you again. Will you keep posting and asking questions?

I will be going to Mayo in Rochester. I have read SO much about all different kinds of treatments and such. I guess that’s when you just have to trust your Dr. I just wish the main tumor in myluver wasn’t so large. Over 6 cm. That seems to make some treatments not an option.

Pavlina, the growth was detected through routine MRI’s , and then verified with a PET scan, which was used to compare with my original PET scan 2 years ago.

My liver had an 8x6cm lesion and my pancreas had an 8x6cm tumor which was my primary. I started chemo. Both eventually shrunk, started working again, and are stable on a lower dose of maintenance chemo. Yours hopefully will have similar, if not better, results. Stay positive. It really helps.

Thank you much for your reply. It helps to hear about other people’s experiences. I hope you continue to do good! Keep us posted.

In my opinion, you have the right attitude! Someone somewhere has it worse than we do. Staying positive and grateful is job #1. I was diagnosed with neuroendocrine cancer on January 5, 2023. Currently the cancer has not spread to other areas. They believe the pancreas was the primary source of the liver though I don’t have pancreatic cancer. Initially I had one small spot on my pancreas and one on my kidney, which in the most recent PET scan appear almost non-existent. Prior to my diagnosis my primary symptom was diarrhea, which I had off and on from August 2022 - November 2022, and a very high ferritin count. My PCP recommended a sonogram of the liver which indicated several liver spots, followed by a CT scan which confirmed the spots (25+) and a biopsy on January 5, 2023 confirmed the cancer diagnosis.

Beginning on 2/24/23 I receive a Lanreotide injection every 3 weeks.
I’ve received 4 treatments of chemoembolization (3/31/23, 5/8/23, 5/31/23, 6/23/23). The first treatment covered ⅓ of the liver and my reaction was severe enough (vomiting, intense shoulder pain as there is a nerve running along the liver through the shoulders that was irritated), that my Liver Oncologist decided to treat the remaining ⅔ of the liver in 3 treatments, not two. Between June 2023 and Oct 2024 I received the Lanreotide injections, but no other treatments.

In September 2024 I was accepted into a pre-FDA trial ([212Pb] VMT-Or-NET). Its a new form of radiation, Alpha amino vs traditional Beta amino. I was the 11th person in USA to gain access to the trial. How? Timing. My Oncologist had just received a “spot” in the trial and one primary condition for acceptance was that I hadn't had radiation before (check). I also met 15 other required conditions, luckily good looking was not one of them. I’ve had 2 of 4 scheduled infusions, spread 8 weeks apart. Since my first treatment on Oct 8, 2024, I have had two MRI’s and two PET Scans. My most recent MRI (Nov 2024) in comparison to my Sept 2024 baseline MRI, showed that after one infusion the largest of my 30 tumors have shrunk about 2mm. I had a second infusion in early December 2024 and have another MRI/scan scheduled for next week with a follow up review two days later to see how the treatments are progressing/working. My 3rd infusion is occurring on January 28. Side effects have been very minimal with fatigue being the most evident. On a weekly basis I have blood work, “vitals” (blood pressure, O2 and temperature measurements), as well as a very basic physical.
Healthwise, outside of the cancer, I’ve never been healthier. In the last 24 years I have run 20+ marathons/ultramarathons and numerous half marathons, though a knee injury has limited my cardio activity to walking on a treadmill. I try to exercise for about 75 minutes each day (typically 20 minutes core, 20 minutes weights, 30 minutes fast walk on the treadmill). I’m about 5’10” and weigh 171 lbs with a target of 168. I have never smoked and was a moderate wine drinker though I stopped drinking as soon as I was diagnosed in Dec 2023. I continue to work (Finance VP for a large software company) and fortunately my stress level is low. I try to eat healthy (red meat 1x/month) and eat lots of blueberries. I have the love and support of my wife, kids and close friends. I haven’t told many people I have cancer because I don’t want anyone to feel sympathy, treat me differently, etc. I feel lucky that my primary care physician scheduled liver scans two years ago after 3 months of stomach issues. Her focus on doing right for me saved my life.

Daily I take two medications for high blood pressure: Amlodipine - 5mg, Chlorthalidone - 25mg. In addition I take an OTC allergy pill, a multi-vitamin and supplements, which include fish oil w.omega3, iron, potassium, magnesium, folic acid and B12. I measure my blood pressure every day and it's consistently in the 130/83 range. I wish everyone all the best and love reading how people are finding bright spots as they progress in their journey.
Tom

@hollywood819: thank you for your post- this info will help many of us! I have a question: The clinical trial study you are receiving -is it called Lutathera or PRRT Alpha vs. Beta treatment?
I just finished a Beta Lutathera (PRRT) 4 session infusion treatment (6mo) and got great results on my NET Sm. Intestine primary w/ liver metastases tumors: significant tumor shrinkage with some completely diminished!
I am very interested in your Beta vs. Alpha experience and the conclusion of this trial’s recommendation for Alpha’s treatment. Please update your experience as the treatment progresses!! New NET treatment options are vital to all NET patient’s quality of life! Thank you for your willingness to share with me. Best health to you, Bette

https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2023-06702&r=1
https://www.clinicaltrials.gov/study/NCT05636618?term=Targeted%20Alpha-Particle%20Therapy%20for%20Advanced%20SSTR2%20Positive%20Neuroendocrine%20Tumors&rank=1
Perspective Therapeutics is the drug manufacturer. Formerly Viewpoint Molecular Targeting, Inc. The protocol Number VMT-α-
NET-T101 / VMT-α-NET

The links above provides details on the trial. I believe the drug is Octreotate, or DOTATATE (hard to keep up with generic and pharmaceutical naming). I've had limited side effects and am hoping for better results after the 2nd infusion.

@dbamos1945 btw, congrats on your results! The industry finds new drugs daily, and from what I've learned, are finding drugs' which work well with one cancer can be applied to treat other cancers. Ex, my drug was initially designed to treat prostate cancer. A trial in Germany showed significance positive results and it just so happens the "receptors" in prostate cancer are almost identical to the receptors in LiverNET, hence the trial for NET cancer patients. Sidenote, starting reading a book recommended by my Radiation Technician called
The Emperor of All Maladies: A Biography of Cancer. I highly recommend it to anyone who has cancer.
Stay positive!