Pleomorphic xanthoastrocytoma tumor (Pxa): help

Posted by lmp1 @lmp1, Jun 27, 2017

My daughter was diagnosed with a Pleomorphic xanthoastrocytoma tumor in February. She had surgery to remove it. They thought they got it all but wasn't sure. She is 25 years old and has a 4 year old and a 1 year old. Her last app and MRI was June 21 and it seems that it is growing back. I know this a rare tumor and I'm having a hard time finding info. Any help someone has would be appreciated. Would love to hear from other survivors of this rare tumor. Thanks,
A very worried mom!

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Colleen Young, Connect Director | @colleenyoung | Jul 23, 2018

In reply to @feb1973 "Am I allowed to post my email here?" + (show)

Hi @feb1973, We recommend not posting your personal email or contact information because Mayo Clinic Connect is a public forum. However if you post a question or message here, others participating in the discussion will join in.

Colleen Young, Connect Director | @colleenyoung | Jul 23, 2018

In reply to @lmp1 "I haven’t been on in a long time. Wanted to check see how everyone is doing?..." + (show)

Hi @lmp1
For some reason, I missed your update that you posted a few days ago. How upsetting that the tumor has tenaciously returned for a third time. When will you know which treatment of the clinical trial she will be getting?

lmp1 | @lmp1 | Jul 25, 2018

In reply to @lmp1 "I haven’t been on in a long time. Wanted to check see how everyone is doing?..." + (show)

@colleenyoung She is in the clinical trial DSP-7888 and .avastin. Monday will be her 4th week in the trial. She gets 6 injections once a week right now. They put them close to the neck and back. Right now it’s leaving raised red marks similar to a bad bug bite but worse. It itches and is a little sore. They are hoping it doesn’t get any worse because if it does she will be dropped from the trial. I wish there was a way to connect with other people doing the trial but so far we haven’t heard of anyone else. She is the only person in our state and they told us there was maybe 12-14 people across the United States participating.

Colleen Young, Connect Director | @colleenyoung | Jul 25, 2018

In reply to @lmp1 "I haven’t been on in a long time. Wanted to check see how everyone is doing?..." + (show)

@lmp1 That would be amazing if we could find others participating in the same clinical trial to share here on Connect. I surely hope that her reactions to the injections doesn't worsen.

@daniellemarie How are you and Danica doing?

javierhortal | @javierhortal | Jul 31, 2018

In reply to @lmp1 "I haven’t been on in a long time. Wanted to check see how everyone is doing?..." + (show)

I have a blog about xanthoastrocytoma. I want to give information about treatments and any topic around this tumor. Also to put in contact people and doctors interested in it.
The blog can be found by typing on the internet:"blog xantoastrocitoma".

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 31, 2018

Hi @javierhortal,

I appreciate your making Connect members aware of of your blog. Since you said, "I want to give information about treatments and any topic around this tumor," I thought I'd mention that's exactly one of the many benefits of joining an online community like Mayo Clinic Connect – you can receive information and support, and learn more about your health issues from shared experiences of a knowledgeable group of people – welcome to Connect!

I look froward to getting to know you, @javierhortal; would you be able to share a few details? Have you or a loved one been diagnosed with this kind of tumor?

javierhortal | @javierhortal | Jul 31, 2018

My son was diagnosed in 2011 with that tumor. He was treated until April 2016. His tumor was grade 3. After participating in a clinical trial, when the tumor grew disproportionately, he died in April 2016.
I want to keep the blog so that the information and the search for possible treatments are known by all ...

rose4622 | @rose4622 | Jul 31, 2018

In reply to @kanaazpereira "Hi @javierhortal, I appreciate your making Connect members aware of of your blog. Since you said,..." + (show)

Yes I was diagnosed with acoustic Neuroma 2 weeks ago. Getting 2nd MRI on Aug 8. I'm 68 years old and have numerous chemical sensitivities. Concerned about reactions to drugs for contrast and pain control. How do I get medical personnel to work with me on these issues?

minnniceguy | @minnniceguy | Jul 31, 2018

do you have some thoughts on immunotherapy options for a PXA tumor with features of an anaplastic astrocytoma?

our oncologist wants to switch over to a BRaf inhibitor. two other patients with this same, unusual tumor have had success switching to a combination of two bRaf inhibitors. but we know that there are serious side effects, so we're holding off as long as humanly possible. we also know that is the only other option we have from Penn.

Over a 10-year battle with this cancer. Many operations and chemo treatments due to multiple resurgences. virtually maxed out on lifetime radiation treatments.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Aug 3, 2018

In reply to @javierhortal "My son was diagnosed in 2011 with that tumor. He was treated until April 2016. His..." + (show)

I am so very sorry to learn about your son, @javierhortal. Although no words can take away the pain of losing a child, I just want to mention how much I respect your resilience in sharing the experience of loss, and keeping a blog "so that the information and the search for possible treatments are known by all …"