Living with Neuroendocrine NETS, any advice?

Hello @gg66 and welcome to Mayo Connect. I completely understand your wanting to chat with others about your concerns and experiences. When I first came to Connect in 2016, I was facing my third surgery for NETs in the upper digestive tract and really wanted some assurance that others had lived through this experience as well. At this point, I am a 21-year survivor, as my first surgery was in 2003.

With that introduction, would you like to share a little about your experience with NETs? For example, how long ago were you diagnosed; what treatments have you received so far (surgery, monthly injections, etc.)?

Finally, what are your main concerns or questions as you face this diagnosis? As I learn more about your experiences, I will invite other members of our NET support group to share with you.

I look forward to hearing from you!

My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being 8x6cm. There were traces of the cancer throughout my body mostly in my bones. I started captem. It took a few cycles but everything started shrinking. After 13 cycles, my pancreas and liver were working again, so I was switched to a lower dose of maintenance capecitabine. After 1.5 years of just capecitabine, everything is still stable. Keep the faith. There is hope.

@kaiulani: I would not accept this lack of treatment! Search out a Neuroendocrine Cancer Specialist and be persistent! Most Cancer Hospitals have information on specialists that will help you. There are many treatments that are available depending on your medical issues and you need their guidance. I know it seems like a brick wall, but other Canadian NET patients have been successful in obtaining quality care. I wish you the best…

I live in Canada: aside from having a Whipple / liver debulking in October 2023 and starting monthly lanreotide injections in March of 2024, the main “treatment” that has been offered to me (repeatedly) is MAiD (a handy acronym for “medical assistance in dying”). I’m still waiting and waiting and waiting some more to hear about PRRT. I have NEVER been contacted about any clinical studies. I have stage 4 pNET which is ruthlessly advancing but I don’t even have a follow-up appointment. That is the state of healthcare in Canada SMH

has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.

@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.

has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.

I was really sick when I first started Captem. I experienced side effects of nausea, vomiting... you will be given something for the nausea and vomiting to take before taking the Temozolomide, overall body aches and pains, mouth sores, neuropathy, and fatigue. I didn't get everything all of the time, but I did experience most of them eventually. My body has adapted much better over time. I no longer take support meds like gabapentin for nerve pain or motion sickness patches for nausea. It does take some getting used to but I am alive. I shouldn't be. If you have any other questions, just let me know.