New and scared
My husband (30M) was recently diagnosed with NET in June. They believe the primary lesion was the lung but they’ve found masses on his liver and numerous Mets on his bones. He had two large lesions on his collarbone and pelvis which pretty much completely immobilized him.
We spent 5 weeks at University of Michigan with him inpatient to get his pain under control which included five rounds of high dose radiation and an emergency round of chemo once his final pathology came in.
He’s now finished up his third round of carboplatin and etoposide and one round of immunotherapy. They added on neulasta this round due to low counts the last two times.
I’m mostly putting this in here to see if anyone else has experience in this type of NET. He struggles so much with lower back pain that even though his bone pain on his pelvis and collarbone are gone he’s still not very mobile. He’s on a pretty decent dose of methadone for pain control and we’ve added in Claritin for the joint pain but he’s still pretty uncomfortable. And we don’t want to up doses and fight an even bigger battle with the bowel and constipation. Honestly any advice or information is helpful. I’m (30F) his full time caregiver but I also work full time, thankfully from home for now while he’s going through treatment. But I know this is just the beginning of a long and brutal journey and I just want to support him and advocate for him as best as I can.