Living with Neuroendocrine NETS, any advice?

PRRT came first because I was in a trial. I'm lucky the CAPTEM is working. Thank you!

I’ve had excellent care! Been palliative care since diagnosis. I go to University of Michigan Medical center I live 30 miles away. GI care was a real challenge I’ve had about 10 endoscopy’s with dilations. I take a lot of proton pump inhibitors and sulcrafate daily

@gg66: Agree with all above, unfortunately, NETS stinks! HOWEVER, if we were given a choice between most “Cancer” and NETS, wouldn’t we choose our current plight? We at least have treatments that work better, and most importantly to me- we can have hope of living longer due to slow growth probability. Yes, our NETS cells do metastasize to other organs and areas of our bodies and we must come to accept this fact after diagnosis. With all of the treatment options we are given, we must learn and evaluate the Risk vs. % of tumor resolution offered by research vs. Side-effects with treatment = Quality of Life & Length of projected Time Added. It’s a crap shoot! After much prayer, peer experience knowledge, Dr advice, etc… we make our decision which treatment to “TRY” and know there is no guarantee we will be among the privileged to have “tumor stability” (and sheer luck to have tumor shrinkage and immense luck to see tumor elimination on PET scans)!
Cancer stinks! NET patients in general choose to learn to FIGHT this disease and HOPE for a long life.
Upon confirmed diagnosis and 2nd Opinions, the only real choice we have is to give up and let cancer win, or fight every tumor progression with the best tool treatments offered. At least that is how I see it…. Bette

Definitely identify with the private moments of emotions. My wife is a natural born worrier.. She worries to the point where it effects her health.. Just talking about it she will breakdown.. Started this journey Dec. 2022, started with Lanreotide, then switched to ocreotide, which eliminated my hot flashes. Last week started Lutathera treatments . Thankful all my symptoms are minimal, occasionally stomach cramps or nausea. I am grateful that all my organs are fully functional and I can appear to have a normal life.. It has increased my faith which I is also a positive.. I definitely look at life and what people get mad or angry about differently.. I remember the saying “ Don’t sweat the small stuff” and it’s all small stuff in comparison..

@vinnie694: Vinnie, your post is so hopeful yet realistic! Thank you for sharing your feelings - it helps all of us to know others are in our emotional shoes!
I am so glad to learn your Lutathera (PRRT) infusions are going well. I will be happy to report my Lutathera 4 series treatment results soon.
Best of health to you Vinnie! Bette

I discovered by a self orderded MRI in Mar. of 2023 that I had Nets. I have Grade 2 - Stage 4 mets to the liver.

I wish the NETS were predictable for everyone, but unfortunately, we must discover how we respond to different treatments. I have an Oncology team (which I think is important) and working my way through masses of testings and many treatments. PRRT did not work for me. Histotripsy did somewhat. I am now on 2 treatments - Lanreotide which helps to control some symptoms and gives me others (lethargy) and Lenvima (Lenatinib) which does somewhat the same but hopefully with some shrinkage. I was a frequent traveller and had a very active life, now my bed is my favorite place. All that has changed and adapting is a work in progress.

Everyday I read about progress in the field of Cancer with the latest out of Russia of an injection (much like a Covid MRna shot. Moderna is working on this as well.

A good mindset is critical. Hugs to all who are dealing with this (not so rare) disease. Hang in. Do what makes you happy - Photo below - 'This is me after the groundbreaking Histotripsy'.

I have Stage Four as well. I feel genuinely hopeful with all the groundbreaking research and advancing clinical trials.

Good luck to you!!!!

hey @gg66, I thought I'd throw in my welcome too. I see your question generated a lot of helpful and supportive posts. Now it's your turn.

I look forward to getting to know more about you. And I look forward to tips you can share with people new to NETs.

What type of NETs are you living with? You mention concerns. What are your concerns at the moment?

Living with NET with symptoms of flushing,diarrhea, tremors and profuse sweats. Had radiation chemotherapy and now on chemotherapy of another type. The injections every 28 days of Sandostatin are helping the tremors and sweating, the diarrhea not so much, but now I’m experiencing swelling of the ankles and feet. My ankles are always sore and I see this listed in the symptoms of NET . Anyone else have this symptom?.

Hello @catalinaharley752 and welcome. I'm glad that you found this forum where you can share your experience with NETs with others. When I first found Mayo Connect, I was facing my third surgery for NETs in the upper digestive tract and felt very encouraged and more hopeful after reading the posts of others who had faced this same issue.

As you have just begun posting on Connect, I'm looking forward to learning more about your issues with NETs. For example, how long ago were NETs diagnosed, where were they located, and have you had any surgeries?

As I learn more about your experiences, I can connect you with others with similar experiences.

I look forward to hearing from you again.