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Wed, Apr 10 7:46am · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

My son is feeling great. He was seen at Mayo this past Monday. They did a full body PET scan for Neuroendocrine cancer cells and found nothing. They did find a 2mm nodule on his right lung that they are not too concerned about but to be safe they want him back in 6 months just to take another look at it to make sure it is not growing into something. We were happy with the results. He has been feeling well all winter and did participate in his school sports without any problems. All is great right now. Thanks for checking in.

Wed, Apr 3 8:32am · Belatacept in Transplants

I had 2 kidney transplants. Both living donors. I had my 2nd one almost 9 years ago. About 4 years ago I was taken off tacrolimus and put on the belatacept infusion once a month. It was the best thing that could of happened. I have never felt better on the belatacept transfusion.

Nov 12, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

He was seen by 2 medical oncologists and a surgeon who does the children's appendectomies there at Mayo. None of who you mentioned though. How did you know you had another NET? Were you scanned yearly? or Blood tested yearly? Thank you.

Nov 12, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

Thank you for this reply. That really helps to know that there is a chance it will not metastasize since it was 1.8cm. We were told it was a very slow growing cancer. We just did not know how slow? We only were in to see 2 oncologists at the mayo and a surgeon who does appendectomies. I will look into trying to schedule an appointment with a NET's specialist. I did not know there were those actual specialists at the mayo. Thank you again so much for taking the time to chat with me. This does make me feel better.

Nov 12, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

His tumor was 1.8cm and located in the middle of his appendix. He has been seen at Mayo. We were told to come back in March for a full body pet scan to see if anything is still in there and go from there. The waiting is just so hard. We are always thinking about it. And every time he says he is not feeling right or this hurts for that hurts I just cringe. It's so hard to not think about it and go about your every day life. But trying hard too.

Nov 12, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

My son is feeling good. His surgery was September 9th. He has no symptoms of anything. We were seen at Mayo on October 1st and 8th for consultations. They are the ones who said to come back in March for a full body pet scan and go from there. But we are so worried about it. Did it spread or is it spreading? This waiting period is really hard not only on us parents but him too.

Nov 11, 2018 · My son's neuroendocrine tumor in Neuroendocrine Tumors (NETs)

My 17yr old son suffered a ruptured appendix. After surgery to remove his appendix, pathology found a neuroendocrine tumor in it. And 1 of the 3 lymph nodes that came out with the appendix had less than 3 percent cancer cells in it. We are waiting 6 months for things to heal inside then having a pet scan done to see if it had spread anywhere else. Has anyone else had this? If so did it spread? I understand this is pretty rare for a child to get this tumor.