Mayo Clinic Visit with the Neuro-oncologist

Today was amazing.  For one, it is simply wonderful to be back in Minnesota with the beautiful landscapes, fantastic Caribou coffee, and all of the “Minnesota Nice People.”  I don’t know if it’s just me, and my Minnesotan roots, but this place is special.  🙂  Mayo Clinic is also special.  The neuro-doctor was extremely thorough, and gave us a good hour and a half of her time.   She is a gorgeous blond woman in her fifties with tons of degrees behind her name.  I was a tad envious of all her accomplishments, but am SO very grateful for people like her who dedicate their lives to specializing so acutely.

Her recommendation was very similar to the Cleveland Clinic’s–surgery followed by chemo and radiation.  Apparently, the standard of care changed this year for my type of brain tumors due to studies that found patients who combined the two, instead of the usual radiation only regimen, lived longer, some up to ten years longer if I remember correctly.  😉  I learned that PET scans are fairly useless where the brain is concerned, because unlike the rest of the body, the brain is a monstrous consumer of glucose and actually absorbs more glucose than a grade 4 tumor.  She has heard of the ketogenic diet, but feels it is quite burdensome to do (which is spot on), but said that if it empowers me to be doing something than to keep on doing it.  (Due to the lack of accruable data on the diet and its effect on cancer she is hesitant, but did mention that it could help with seizure control).  🙂  We asked her about the Polio Vaccine for brain tumors, and well, that is also preliminary, and the reality with that appears bleaker than the ketogenic diet.

The neuro-oncologist also stated that although my situation is not curable, I am among the “healthiest” in my situation–young, fit, strong, and sharp (very generous of her I’d say). So, although I am not in any way lucky to have a brain tumor, I am among the luckiest of the brain tumor lot.  😉   The neuro-surgeon that does brain mapping with the craniotomy was out of the office as he is recovering from running in the Boston Marathon, but will be back next week to review my case.  So, we will wait to hear what he thinks.  I met with him 5 years ago when he first came on with Mayo.  He’s a very nice, personable, confident doctor, and we would feel confident to have him perform the surgery if we decide to go that route.

 Now we are headed to central Minnesota to check in with Andrew’s folks for a short visit and will head back to Mayo tomorrow for one more appointment.  Thanks for checking in!  xoxo  ~Autumn

4 Comments Add yours

  1. Leigh says:

    Thank you for the update. Sounds like you have a good team to work with. Enjoy your time in Minnesota and visiting with family. Is it snowing there? We were wearing shorts over the weekend – back to winter coats today…small amount of flurries all day. Looking forward to seeing your gang soon!! Hugs!

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  2. Linda Grimes says:

    Sounds like good news!
    xx

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  3. tatianagirl says:

    Thanks for the update. I do continually send my hugs and prayers. Hope you will hear from your neuro-surgeon soon so you can make plans too.

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  4. tatianagirl says:

    Life is is a mystery ! It is unfair sometimes but what can we do but just live the most of it and enjoy it with our family, friends and loved ones. You are one of the strongest women I have ever known….a fighter ! Thanks for inspiring people around you and whoever reads your posts. Hugs and prayers always….Luv U Autumn !

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