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May 19-25

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Today I had a PET scan. Results were not good. Thankfully my brain MRI looked good last week, but the PET shows new areas. My doc said none of the new spots are in high volumes or bad areas. But, the lymph node in my clavicle is getting larger, the spot on my right hip is larger, I have 2 new spots on my left hip, 1 on upper spine, and 1 on ovaries.

Two options for treatment: immunotherapy 1x/week for 2 weeks on and 1 week off, or a study that would include IV chemo and an oral med. My oncologist is going to consult with the neuro-oncologist at Northwestern and the oncologist at Mayo and get their input on what they think would be the best route. Basically the oral chemo I’m currently taking is not working from my neck down. I will stop taking that today and will begin my new treatment on September 3. Trying to stay positive, but fuck this is hard.

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