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Neuroendocrine Tumors (NETs) | Last Active: 4 days ago | Replies (18)
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@lindabees Do you mind sharing your husband’s treatment plan? My husband has an NET that they believe started in the jejunum that spread to his liver. He was diagnosed in Dec of 23 and began monthly injections in Jan of 24. Most recent scans (PET and CT scans) no signs of new tumors, but his chromagin A levels are higher than in the beginning so they are referring us to a nuclear medicine facility to hopefully be able to receive an IV infusion chemotherapy treatment.
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@tgsenn70
Sure. But first, is your husband seeing a net specialist? Is the iv chemotherapy you refer to PRRT? If so, and just for clarification, thats not a chemo treatment. Its a nuclear medicine treatment where radioactive isotopes are injected which then bind to net tumors with sstr receptors which then treat the tumors.
As for my husband's treatments, he started with a distal pancreatectomy followed by y90 to both lobes of the liver. This killed the majority of the tumors in the liver and kept the rest stable, along with octreotide shots, for several years. He was then on afinitor for 3 years but only because of a growing lymph node, then had a break of all treatments for 4 years when the liver tumors finally started acting up again. He was on captem for 14 cycles and is now on a maintenance does of capcetibine only, which is keeping him stable.