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  • Writer's pictureBurt Rosen

10/28 - Update


It's been a month since updates but that's since there hasn't been a ton of changes going on. Here's the update!

  • Symptoms are still fairly mild but I definitely have up-and-down days

    • Fatigue

    • Brain fog (very mild and only occasional)

    • Stomach

    • Sleep

    • Skin issues

  • For the most part i deal with the symptoms but I still have them all

  • I am on shot # 3 of Lanreotide. I will be getting shots for a very very long time. I get them every 28 days

  • As I mentioned in the last update, my scans in September were good. My next scans are on December 19

  • My next oncologist appointment is December 19. We will have to discuss pancreas and spleen surgery then. I am getting mentally prepared.

  • I view my experience in three phases

    • Initial diagnosis - DONE

    • Initial treatments - IN PROCESS

      • Shots, chemo, surgeries (liver, pancreas, etc)

    • Surveillance and who the hell knows what - WONT START TIL AFTER PANCREAS SURGERY

      • After the pancreas, I will stay on my monthly shots and potentially move to other treatments but also regular scans and treatments based on the scans (I will be in treatment for the rest of my life, but it's treatable so I am fine with that)

  • We paid more attention to the kidney this week too. We had a great appointment with the Urologic Oncologist.

    • Doesn't think I need to do anything right now - it's stable or shrinking which leads them to believe it's not getting worse or spreading

    • She is worried that if I do anything it will put the treatments for the PNET at risk

    • So there might be progress on the kidney but it still remains a secondary concern

I think that's the update! Thanks for reading!

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1 Comment


ojaifarm
Oct 28, 2023

I’m so appreciative getting your updates. I especially like that your best path forward might be (fingers crossed) just staying the course as your tumors shrink. I’m hoping for that! In the meantime it’s great you’re in a good mindset for possible surgeries. I believe in you🥰🦋🩵🪷🪴🙏🏻

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