Thursday 02nd October 2014,
The Liz Army

What do you want me to learn at the National Brain Tumor Society Summit?

I’m not a Red Sox fan but I hope to see Fenway Park while I’m in town.

NOTE: I am no longer accepting questions to bring to the NBTS Summit.

Later this week I am attending the National Brain Tumor Society’s (NBTS) annual summit in Boston, MA.

According to the website, the Summit brings together “Patients and families, advocates, researchers, clinicians, and government and industry professionals who will connect, share the latest in brain tumor research, celebrate accomplishments, and take action to make our voices heard.”

That sounds like some brain tumor-awesomeness to me!

I am attending the Summit because I will be receiving some much need training to be the National Brain Tumor Society’s lead state advocate in 2013 (representing California). Twitter users can track Summit with the hashtag #NBTSSummit12.Hopefully more people than just me will be using this hashtag.

My brain tumor question to all of you is this:

If I am going to be surrounded by the best and brightest in the world of brain tumor research and advocacy, what do you hope I learn? What information do you want me to bring back to all of you so you can read about it here on the blog?

I value your input and commentary.

Background info: Earlier this year I traveled to Washington, DC for the National Brain Tumor Society’s annual “Head to the Hill” advocacy event where we got to lobby members of Congress about funding for the National Institutes of Health (and the National Cancer Institute). You can say I’m a nerd about this stuff.

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  • Patrick Macedo

    Hi Liz, since you’re asking here you go:
    - BT in people without symptons: Have any studies been made on random groups to see if tumors are present in people that have not presented symptons? Since most people find out about their tumors when they have seizures what are the chances of people having a tumor and not presenting symptons? Is there a chance that people might have and cure their tumors on their own? I heard something similar on breast cancer…
    - Symptons: BTs are fairly common in young kids (my niece was just diagnosed at 3 years old!). I know that dehydration and over-hydration can lead to seizures. What if we are simply finding tumors that were never diagnosed in a pre-MRI era and are operating kids that might had been fine after all?
    - Tall people and BT – tall people have a higher chance of developing BT. Are we tall because we have a BT (I am 6’3 and my parents are really short…) or do we have BT because we are tall?
    I hope you don’t mind these somewhat silly questions but I’ve been asking myself these questions lately and could not miss this chance to ask experts.
    Thanks so much for everything you do, you are the best!

  • Ingrid

    Hi Liz,

    Good luck on your training, hope you’ll learn a lot and have a good time!

    Here’s a very practical question.. Or should I say a search for simplification of very complicated stuff.

    Does any of those smart and experienced patients/doctors have a concrete and simple suggestion for a “temodar diet”? I have of course heard a lot of advice as to what to eat and not eat- and read books about it too. Stuff that helps the poison work against the cancer cells and also food possible to eat even when feeling kind of sick. There’s so much to choose from, and I totally get that there is no “perfect answer”. But still; Any concrete potential menus?

    All the best,
    Ingrid

  • Lisa

    I would love to know what you learn as far as the latest research in treatment, causes, etc. If they have more info on specific tumor types, as well as what you feel is the best thing you learned at it (since I wish I could go too!)

  • Karissa

    Hi Liz, thank you for being so active in the brain tumor community! I am wondering if there has been any more findings on the 1p19q codeletion in gliomas. It has seemed up in the air regarding whether or not those without the codeletions have a shorter time until recurrence/shorter survival time, or if having the deletions just affects the receptiveness of chemotherapy for oligodendrogliomas. I have a mixed glioma without the deletions and I’m curious to know if this makes my tumor more aggressive even though it is only a grade 2.

  • Joana

    Hello Liz – I’ve been following your blog since I started Temodar a year ago. I’m a college student and an English major. I love writing and especially writing about cancer related topics, issues, positive results, etc. I was just wondering if you had any advice about where to go to to write about the topic? If you have any helpful ideas, my email is joanamck@umich.edu. I appreciate this so much! – Joana