#MayoClinicNeuroChat about Pediatric Brain Tumors

Mon, Nov 27, 2017
10:00am to 10:30am CT

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Dr. David Daniels and Dr. Amulya Nageswara Rao talk about pediatric brain tumors.

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daniellemarie
@daniellemarie

Posts: 24
Joined: Aug 13, 2017
Posted by @daniellemarie, Sep 4, 2017

Hello my name is Danielle my daughter Danica is 8 years old she has pxa brain tumor! She has had surgery march 2017 and radiation now currently on oral chemo tafinlar twice a day. Her MRI is set sept 20th and results the 22nd. Is tafinlar a good pick for shrinking a pxa tumor

Posted by @colleenyoung, Nov 27, 2017

Hi @daniellemarie
Drs. Daniels and Rao replied to your question after the broadcast:
“Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. However, Tafinlar is a medication that is used to target BRAFV600E mutant tumors and can be given alone or in combination with other medications. PXAs tend to have this specific mutation and her physician probably placed her on this because the tumor showed this mutation.”

Danielle, has your daughter’s doctor talked to you about the BRAFV600E mutation?

daniellemarie
@daniellemarie

Posts: 24
Joined: Aug 13, 2017
Posted by @daniellemarie, Nov 28, 2017

Yes her doctors have spoke to me just so much to try to understand. Thank you so much

Posted by @kanaazpereira, Sep 29, 2017

Hi @markelia @taterjoy @lmp1 @that_girl @peque @mountainoceangirl @121861 @audrapopp @daniellemarie @spangles @pilocysticadult32 @kelliemm @nancye3,

I’d like to invite you to join us on Friday, September 29 at 3 p.m. CT for a Video Q&A with Dr. David Daniels and Dr. Amulya Nageswara Rao about pediatric brain tumors.
Drs. Daniels and Rao will answer questions live. Post a question below before or during the event.

Simply click View & Reply in the email notification to see all the details and to sign-up. You can participate in the Video Q&A right here on Connect by returning to this page, and the video will be shown at the top of the page. Feel free to post your question here before or during the presentation.

daniellemarie
@daniellemarie

Posts: 24
Joined: Aug 13, 2017
Posted by @daniellemarie, Sep 29, 2017

Dr. David is tafinlar oral chemo a good treatment for pxa grade 3. My daughter had MRI and results and it seems to be working because tumor has not grown! And is there cures or treatments that take the cells away. She had radiation after surgery but hers grew back before radiation started working so now she’s on tafinlar twice a day!

barbara
@barbaraafl

Posts: 1
Joined: Oct 01, 2014
Posted by @barbaraafl, Nov 27, 2017

How can we connect with the video q&a?

Posted by @colleenyoung, Nov 27, 2017

Hi Barbara,
The video will be posted to this page as soon as we are live. There has been a technical delay. Stay tuned.

Posted by @colleenyoung, Nov 27, 2017

Barbara, we’re having issues with the live feed. The video will be posted later, but unfortunately not live. Do you have a question that you would like to ask?

KF
@kjforret

Posts: 4
Joined: May 26, 2015
Posted by @kjforret, Nov 27, 2017

Hello – @colleenyoung do you know when will the video be posted? thanks

Posted by @colleenyoung, Nov 27, 2017

@daniellemarie @barbaraafl @kjforret
The video #MayoClinicNeuroChat about Pediatric Brain Tumors is now available and archived on this page: https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-pediatric-brain-tumors-1/

Liked by daniellemarie

KF
@kjforret

Posts: 4
Joined: May 26, 2015
Posted by @kjforret, Nov 27, 2017

@colleenyoung, thanks but this link doesn’t seem to be working for me.

Posted by @colleenyoung, Nov 27, 2017

Try clicking VIEW & COMMENT in the email. The video will be at the top of the page.

daniellemarie
@daniellemarie

Posts: 24
Joined: Aug 13, 2017
Posted by @daniellemarie, Nov 27, 2017

Thank you

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