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  • Writer's pictureBurt Rosen

My story, it's not fun but will give you context

Updated: Nov 14, 2022

I was admitted to the hospital (7/1/2022) for an ammonia buildup in my brain (really scary brain fog) due to liver malfunction. I had ulcers in my duodenum that burst and caused internal bleeding. (I am oversimplifying a lot but who wants more detail?)

While in the hospital for internal bleeding, they did CT Scans on me and found masses in my kidney, pancreas, liver, and upper stomach area (and a couple of others but not as important). So, I have PNET cancer AND Kidney cancer (I don't do anything the normal way, so I had to have a rare pancreatic cancer (not the scary one) AND another one too. I guess one isn't enough!).

We decided in the hospital that stopping the bleeding was Phase I and cancer was Phase II. We didn't really start dealing with cancer (other than biopsies) until 7/13 when I was discharged and stable.

We made it through the bleeding. Got out of the hospital and started meeting with Oncologists (Phase II).

We had a list of questions to research but also have amazing friends who work in radiation oncology, research, and gastroenterology so we had great advisors. We finally settled on a doctor at OHSU in Portland Oregon. He and the team are NET specialists and awesome.

Now you will understand everything else I write, and if you don't, feel free to reach out and I'll explain it.

So for those trying to keep track (I know I can ramble a bit), my diagnosis:

  • Pancreatic Neuroendocrine Tumors (Its a form of pancreatic cancer but not the scary kind which is called pancreatic adenocarcinoma or pancreatic exocrine cancer)

    • Well Defined

    • Stage 4 (due to metastasis in the liver and other places by definition its stage 4)

    • Grade 2 (graded 1-4 and defines the severity and aggressiveness of the cancer, 4 is most aggressive)

    • KI67 of 13% (this is advanced if you really care. its another # that shows severity, like the Grade)

    • Treatable and most people live a long time with it. I've been told to treat it like I have a chronic illness

  • Renal Clear Cell Carcinoma. Kidney cancer. Slower growing and has not metastasized as the PNET has. The PNET is priority #1 in my treatment due to the spread of it.

So, what does all this mean? It means I have two types of cancer, both treatable through meds and surgery and natural means. I am currently on oral chemotherapy (Not IV, I just take pills) called Capecitabine and Temozolomide which are proving promising. My tumors have shrunken or stayed stable since I started treatment (I am on a break starting round 5 next week or so). I will stay on this protocol until we see diminished results. Then I get to have surgery (yay!). I hope this helps explain it all! If not, ask me questions! There is no question off limits with me.

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