Welcome to the NETs Group! Come say hi.

After 7 cycles of the above chemo (pills) treatment, our Cancer Care Team at Froedert Hospital in Milwaukee, has decided that I have progressed enough that surgery is back on the table to go in and knock the NET down even further. Their plan is to remove the remaining mass on the pancreas, remove the gall bladder as it has become enflamed from the repeated Chemo cycles, and remove the remaining tumors on the Liver by either surgery or insert radioactive material in the cancer tumors to kill them. Hopefully, it will be completed before the end of the year, my question to any, that have had any similar surgery, as to what to expect, in regards to recovery and lifestyle after this surgery. After this surgery, our cancer care team believes I will only have to take the monthly shot as a maintence function to keep the NET at bay hopefully for a very long time.

Absolutely, she is on a two week cycle on and two weeks off of chemo. For all 14 days of the cycle she takes Capecitabine 500mg tablets, and from day 10 - 14 of each cycle she takes in addition to the Capecitabine, Temozolomide 100mg tablets. She has completed six straight cycles since April diagnosis, with a probable continuance until there is no more improvement, then possible surgery on the mass around the pancreas once it is the smallest the chemo can get it. Our follow-up with Froedert is November 29th, to make final decision. As I mentioned before, there are certainly still good and bad days still, but she has been able to continue to work part-time through all cycles, as a small side benefit, with no loss of hair.

Hello @kim1965

I so appreciate your encouraging post to @sweet63. I'm so glad that your wife has done so well. Yes, having a NETs often has a much slower growth than other cancers.
How is your wife feeling now? You mention that she is taking chemo by pills, do you mind sharing the name of the chemo medication she is taking?

Hi @sweet 63,
My wife Kim was diagnosed with NET in April of this year. We were devasted at first, after all the tests, it was determined that she had NET's with numereous spots all over the liver and a mass attached to the tail of the pancreas. The best news was that it was NET's, and not the more often diagnosed pancreatic cancer. NET's has a much better prognosis over 5 years. Our Cancer Care Team from Froedert Hospital in Milwaukee, had her start chemotherapy by pill, and after 3 cycles, there was 50% reduction in the tumors on both liver and pancreas. Now after 3 more cycles, there has been more reduction around 20%, with the plan to continue the chemotherapy until there is no more reduction, as she has been able to tolerate the pill version of chemothearapy well enough to continue part-time work through it all. At that point the plan will be to remove the mass on the pancreas, and reevaluate next steps. The cancer care team has repeatingly mentioned that they believe they can kick this down to a maintenance issue decades down the trail, answering our prayers for a promising diagnosis long term. NET's as we read is in only about 2% of the cases, and consider this a true blessing to allow her a fair fight to at least knock this down to allow for her to live a full life. Stay strong, there will still be good and bad days, but you will make it.

Hello @sweet63,

Oh, I can so understand your concern! So many of us with a NET diagnosis have worries and concerns regarding having a diagnosis such as this and when there are multiple locations for the NETs it seems even more worrisome. I would like to introduce you to @patrick031621 who has had a NET diagnosis for 19 years now with multiple tumors in different areas. I hope that he will share some of his experiences with you. I would also like to invite @kim1965 and @gneiss50, to post with you. They have also had multiple NETs.

You might also find Mayo Clinic's NETs support group helpful to you. (It is not necessary to be a Mayo patient to attend this group.) Have you attended this group? It meets virtually, via Zoom, on the first Thursday of each month at 5:30 EST. Here you will meet with other NET patients who share their journey during the meeting. Look for information about the next meeting in the NETs discussion group. I'll be sure that you get the notification.

As I learn more about your journey with NETs, I'll connect you with other members who have a situation similar to yours. You mention that you had chemo last year. What type of chemo was it? Are the injections that you are starting this week Octreotide or something else?

Hi Teresa. I now know that I am NET. I didn't even know what that was , however I am new. I did the chemo last year and I will be starting the injections this week. But my NET is everywhere!! It is in 5 different organs/ or locations. And today I discovered that instead of one 5cm spot I now have 4 more in my liver. So as I read everybody's posts I realize that . But I feel very good and healthy. No side effects yet except that I get tired easier.

Great. That seems positive! Prayers to you. I feel so stupid and uninformed! And I want to learn what to expect and things that I can do.

I am also like you. I am new to this, but my diagnosis is worse in that my pancreatic tumor has spread to other organs. I have a spot of it in 5 locations now. But I feel good still feel healthy. Today's visit did not go well as they found the start of 4 more in my liver. But I have no idea what to expect or what I can do to make it easier. Maybe we can learn together?

Hello everyone. New to everything. Stage 4 but what is NET? Diagnosis is Neuroendocrine pancreatic tumor that has spread. But live in very backwoods setting and they are so busy here at my small cancer clinic that they spend minimal time with me. I have no idea what to expect and what I can do to help myself

Such good news, @suzyis7. I'm so glad that you shared your good report.