1. < Neuroendocrine Tumors (NETs)

I am one year out with my diagnosis just finished 4th round of PRRT

Posted by nevinrbaskin @nevinrbaskin, Jan 10 7:54am

It’s been a long path, years of flushing, stomach cramps and diarrhea that came and went with no warning or explanation. Had a resection of my small bowel and hernia surgery finally on the mends. Just finished 4th round of PRRT. I am feeling nauseous daily and fatigued. I try and live in the moment as I can get lots of anxiety from the uncertainty surrounding my health. I found this thread and reading some messages sent me off the edge emotionally. I am fine. It’s just hard to get used to the emotional roller coaster.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

nevinrbaskin | @nevinrbaskin | Jan 20 6:49am
In reply to @ericnjeffrey "about 10 inches" + (show)
@ericnjeffrey

about 10 inches

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Two feet

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tereh | @tereh | Jan 22 9:33am
In reply to @nevinrbaskin "I have Grade 1 stage 4 stage NET. The primary tumor was resected which was in..." + (show)
@nevinrbaskin

I have Grade 1 stage 4 stage NET. The primary tumor was resected which was in the small intestines. I also have a tumor in the mesentery area which is pressing on the mesentery vein and artery, multiple lesions in the liver, subclavian lymph node and a small spot on my acetabulum. The Doatate PET scan with copper which Dr Wolin ordered at MT Sinai was much clearer than the one I got locally with gallium.
My last PRRT was 1/3 and I have a Doatate PET scan with copper scheduled in April and will have a follow up visit 4/28 with Dr Wolin. I am praying the PRRT shrunk all the tumors.

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We sound very similar. Small bowel primary, mesenteric mass with resection in 2022. I have a consult for PRRT today and I'm terrified. I have non functional tumors with no symptoms. I did Octreotide for 1 year with terrible diarrhea so I stopped it. I have just a few new tiny tumors is my liver and I'm hoping I can put off PRRT for a year with scans every 6 months to watch for change.

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2 replies
nevinrbaskin | @nevinrbaskin | Jan 22 10:09am
In reply to @tereh "We sound very similar. Small bowel primary, mesenteric mass with resection in 2022. I have a..." + (show)
@tereh

We sound very similar. Small bowel primary, mesenteric mass with resection in 2022. I have a consult for PRRT today and I'm terrified. I have non functional tumors with no symptoms. I did Octreotide for 1 year with terrible diarrhea so I stopped it. I have just a few new tiny tumors is my liver and I'm hoping I can put off PRRT for a year with scans every 6 months to watch for change.

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I finished the last prrt and wasn’t as bad as anything else I’ve been through. It’s not easy, none of this … but I traveled to mnt Sinai to Dr Wolin he was wonderful in giving my a plan of attack. You may want to reach out to his office for a second opinion. I highly recommend him.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 22 10:13am
In reply to @tereh "We sound very similar. Small bowel primary, mesenteric mass with resection in 2022. I have a..." + (show)
@tereh

We sound very similar. Small bowel primary, mesenteric mass with resection in 2022. I have a consult for PRRT today and I'm terrified. I have non functional tumors with no symptoms. I did Octreotide for 1 year with terrible diarrhea so I stopped it. I have just a few new tiny tumors is my liver and I'm hoping I can put off PRRT for a year with scans every 6 months to watch for change.

Jump to this post

Hello @tereh,

I hope you get some information to make you more comfortable with your treatment plan. Did your oncologist give you a reason for the need for PRRT? For example, has there been growth in the liver tumors?

I look forward to hearing from you again. Will you post after your appointment and me know how you are doing?

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