Neuroendocrine Carcinoma with Liver Metastasis

Hello @cassandrar4 and welcome to the NETs group. It is understandable that you feel lost. There are good treatments available now for NETs. Is your neuroendocrine tumor in your digestive tract?

Has your medical team suggested a treatment plan yet? What is your most difficult symptom now?

So sorry to reply in septembre i ve been very busy with my husband and i do not have the habit to contact foreing people in this matter, the treatment was 1 octreotide per month since 2020 and this august they decided to put 1 octreotide every 21 days and to have 1 pill every day called Everolimus, reading the reply of vinnie694 i will ask the doctor if is possible to make radiation treatment to my husband but he is very thin 55kgs thanks

Hi Cassandra my husband is in the same way you are, very sad, he has a lot of medicine, octreotide an injection every 21 days, pancreatic enzimas called Creon, i hope he will be good i am with him all the time, i trust in god i have hope

Hello, my name is Cassandra, and I have been diagnosed with a neuroendocrine tumor. However, this is new and scary to me. They said that it has spread to the lymph nodes and liver. I am so hurt because it seems like it happened so fast. I feel lost but I know my God has me.

Hello @mimighosh,

The NETs virtual support group meets on the first Thursday of each month, from 5:30 - 7 P.M. EST. To obtain the Zoom link, you must pre-register. The link provided allows you to register, after registering, you will then receive the Zoom link. So it is a two-step process.

Before July's meeting, I will post the registration link so you can register and then obtain the Zoom link.

I tried thie link yesterday (I didn't see this message until now), but it did not work. Did the meeting take place yesterday?

Thanks for writing back! Next week I get my first scan since I was diagnosed and started monthly injections. A bit anxious about that, but I will know more about how the tumors are reacting to the medicine. I'm 70 so that keeps me less active than I need to be. I think it's the age + NET + depression that's holding me back. Alas. I live in Wisconsin and am getting my treatment at the UW Hospitals. Take care.

I am in the US, Florida,I go to Mayo Jacksonville .. I do get fatigued (could be the age) but but basically feel good, I still go to the gym for an hour when I’m not volunteering to help with the grounds at our church cemetery.. I do my own yard work but only a few hours where I used to be able to work all day. I do however take a nap during the day, but I know a lot of people without this cancer that do that too. . I believe the Lutathera treatment has been out for about 6 years..
Are your Tumors still growing or spreading?

@kaiulani, Try this link https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf#/registration

I don’t think my link is working: it always says they’re waiting g for the host to start the meeting