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  • Writer's pictureBurt Rosen

Updates from 1/20/23

Big week this week!

  • Started cycle 7 of chemo (CapTem) and am on day 2

  • Appointment with Dr. Pegna (my medical oncologist and NET specialist) and blood work on 1/7

    • Blood work looks good and is improving

      • Hemoglobin is at 13.6 (up from 11.6)

      • Ferritin (Iron) is up from 13 to a whopping 24!!!!! Go Iron supplements and Vitamin C!

      • Platelets are 100 down from 157 but they bounce around and he isn't concerned

    • Dr. Pegna feels good with where I am - I am status quo

    • He told me I can do anything I want, and if it hurts, stop. But exercise of all types is fine as is travel

    • He might test a new PPI drug (for ulcers) after we travel to Southern California to look at the impact of my Gastrin levels but that's 3-4 weeks away (there is a type of NETs cancer called a Gastrinoma that we all think I have but the PPI I am currently on elevates my levels of gastrin hence the idea to take me off and test another one to get an accurate read - run-on sentence alert!)

    • My next CT Scan will be in March at some point

  • On 1/19, met with my Urologic Oncologist for the first time (Dr. Jen-Jane Liu, also at OHSU)

    • We loved her. Great bedside manner and is very smart

    • She has a relationship with Dr. Pommier, my NETs surgeon, and they have done a lot of surgeries together (Bonus!)

    • She said my Kidney Cancer is Grade 1 Stage 2

    • There is nothing to show any metastasis and the tumor is stable or shrinking (at least the part they can see and have biopsied)

    • She isn't worried about it at all

    • She agrees with everyone else that the PNET is the priority and treatment for the PNET should lead

    • She gets all the data she needs from the scans and blood work I already get so I don't have to do anything specific for her! Yay!

    • I don't need to do anything special (no treatments) for the kidney cancer outside of what I am already doing

    • The only real treatment for kidney cancer is surgery. As we get closer to my NET surgery (likely this summer but TBD) we can discuss if they can tackle the kidney as well or if it will need to be another procedure

  • On the non-medical front, I am doing yoga again which I love and which really helps me. I am still eating a very clean and healthy diet, meditating, walking, exercising, networking, catching up with people, blogging, volunteering, and sharing, and am convinced more than ever that when my brain is engaged I feel better. Oh, and I now have my permanent crown in but need another one done (will be at the end of a chemo cycle - Dr's orders!)

  • Next week is mellow. Just have an appointment with my OHSU Oncology Naturopath, who I really like a lot

Talk to you soon!

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