About Xanthoastrocytoma: Mayo Clinic Connect

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In the braint tumor group there is a line on the xanthoastrocytoma where the people related to the turmoil tell us about their experience.

Here you can find people who are in a similar situation to us and maybe they will give us some interesting information.

https://connect.mayoclinic.org/discussion/pxa-help/

If you want to share other activa chats the other clinics or hospital about xanthoastrocytoma, send me the information to publish it.

I show you a piece of conversation ... Of course insist that professional and good neurosurgeons, oncologists and radiotherapists we can find them in Spain, Germany, France, Canada, Israel, the United States and many other countries ...

Posted by audrapopp @audrapopp, Wed, Jun 28, 2017 9:21pm
In reply to @colleenyoung "Welcome to Connect, @lmp1. I'd like to introduce you to @audrapopp. She,..." + (show)

First, thank you Colleen for connecting us… because it is such a rare tumor it is difficult, if ever to connect with others and I am happy to be an advocate, support and here for any questions you or your daughter may have. First of all~ Complete surgical resection is currently the best treatment option for this tumor type, that being said~ your best defense is truly “the best neurosurgeon” you can find! If I understand correctly she has not had radiation treatment or chemotherapy of any kind yet. I’m saddened they haven’t connected you with a Neuro-Oncologist yet… sorry, but that alone makes me question her neurosurgeon. Second, what is the pathology report showing from her first tumor? Is it Anaplastic (Grade 3?) I can only assume it is since it has recurred so quickly. Have they tested for the BRAF V600e mutation? Many PXA’s are showing it to be positive for this mutation and there have been a few reports of using targeted mutation therapy with BRAF inhibitors that are shrinking the tumors (Tafinlar & Mekinist drug combination or Veberafinib alone.) I have a lot more info on these if you need and have recently been on them. The BRAF mutation has been found in melanoma, lung and colon cancers and these drugs have been FDA approved for Melanoma so far. Unfortunately, since PXA is so rare my insurance company would not approve the drugs for me, even with an appeal…but luckily the pharmaceutical supplier Novartis granted me a one year supply of the drugs thru the Novartis patient assistance Foundation. If your daughter goes the drug route her MD needs to get applications started ASAP. My insurance process (application, denial & appeal) took well over a quite agonizing month! If she doesn’t do surgery she may want to consider a biopsy to see if her pathology has changed since her surgery 4 months ago. I can’t emphasize enough that she needs to be seen sooner than later by a well qualified Neuro-oncologist to get the best treatment advice going forward. It may mean getting on a plane..but trust me, it will be worth it. Mayo has an easy referral request process. My Neuro-oncologist sees patients both in Rochester, MN and the Mayo campus in Jacksonville, FL. I hope this helps and can continue the conversation. I’m sure you have lots of questions and I’m happy to answer.
With HOPE all things are possible, Audra

Colleen Young, Connect Director send us this information:

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