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Welcome to the NETs Group! Come say hi.
Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (411)Comment receiving replies
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?
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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.