In English-ish Update

Hi everyone. Just trying to capture the most recent details “in english” … kinda 🙃. Of course, this might change as we find out more.

CURRENT FINDINGS:

• 2.5 x 2.0 cm malignant tumor located in the terminal ileum (small intestine).

• Nearby mesenteric necrotic (dead) lymph node measuring 2.7 x 1.8 cm.

• Multiple metastasis (spread) to both lobes of the liver, the largest being 4.5 x 3.6 cm.

• PET-CT revealed new finding of multiple metastasis in the peritoneum (membrane that lines the abdominal cavity).

• PET-CT also revealed NO further metastasis to other organs such as the lungs, pancreas and heart. (This part feels like our first big “win!” 🤩)

TREATMENT PLAN:

Still TBD until we meet with the liver surgeon, but the current thoughts are:

First step: Unquestionably need to remove at least 15% of his small intestine, necrotic lymph node and full appendix.

Although the medical oncologist does not believe the liver masses are operable, there is always a chance. ("So you're saying there's a chance"~ D&D). We meet with the liver surgeon this Friday to see if he thinks otherwise. We are hoping there is a possibility of surgical resection of the liver masses, or even partial. Surgical resection could offer a better outcome, so we are keeping our fingers crossed that this becomes an option.

The medical oncologist wants to treat Paul with Octreocide regardless of surgical plan. It will not cure him, but it is an injection that may be able to reduce the size of the inoperable tumors and prevent further spread. These specific tumors do not respond to chemo or radiation, so that is not an option here.

(Still of course a TON of research we are in the middle of — Clinical trials, immunotherapy, etc etc etc 🤯)

Hope this helps clarify just a bit.

Dayna ❤️

IMPORTANT DISCLAIMER : We are not doctors. We are just normal, everyday people who are sharing what we’ve experienced, in hopes it might help someone else. Nothing in this blog, or anywhere on this website, should be substituted for professional medical advice. Perform your own fact-checks, make sure you do your own research, and consult with the best doctors you can find. It’s also INCREDIBLY important to note that no two NET Cancers are the same, and just because something did or did not happen to Paul, or does or does not work for Paul, doesn’t mean it will or will not work/happen the same way for someone else. Everyone is their own unique case, and every body responds differently to the cancer itself, as well as to the treatments. If you have a NET, please do NOT jump to conclusions based on Paul’s story. We’ve read many stories like Paul’s, but we’ve also read many miracle stories. We strongly encourage you to take this blog as an individual case study, and not as a prognosis for your own health.