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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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daniellemarie | @daniellemarie | Aug 29, 2017
In reply to @daniellemarie "Hello my 8 year old daughter was diagnosed with pxa grade 3! She had it removed..." + (show)
@daniellemarie

Hello my 8 year old daughter was diagnosed with pxa grade 3! She had it removed with Lil pieces left because it was to dangerous to remove. Then she started radiation by the time radiation starting doing its job her tumor started to grow back. She had a seizure and we were air lifted back to Oakland children's hospital and an MRI was done and that's when we found out it grew back! Now she is on tafinlar oral chemo! I am so scared for her and would love to hear from others that have this rare form of brain tumor! Thank you danielle

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@JustinMcClanahan
Danica is doing ok. She has started her oral chemo tafinlar and goes for MRI sept 20th! Praying this tumor is shrinking

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 29, 2017
In reply to @daniellemarie "Hello my 8 year old daughter was diagnosed with pxa grade 3! She had it removed..." + (show)
@daniellemarie

Hello my 8 year old daughter was diagnosed with pxa grade 3! She had it removed with Lil pieces left because it was to dangerous to remove. Then she started radiation by the time radiation starting doing its job her tumor started to grow back. She had a seizure and we were air lifted back to Oakland children's hospital and an MRI was done and that's when we found out it grew back! Now she is on tafinlar oral chemo! I am so scared for her and would love to hear from others that have this rare form of brain tumor! Thank you danielle

Jump to this post

@daniellemarie,

Thank you for updating us on Danica. We are glad to hear she is doing OK with her oral chemo treatment, that is a good news. She is doing well with side effects so far?

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daniellemarie | @daniellemarie | Aug 29, 2017
In reply to @daniellemarie "Hello my 8 year old daughter was diagnosed with pxa grade 3! She had it removed..." + (show)
@daniellemarie

Hello my 8 year old daughter was diagnosed with pxa grade 3! She had it removed with Lil pieces left because it was to dangerous to remove. Then she started radiation by the time radiation starting doing its job her tumor started to grow back. She had a seizure and we were air lifted back to Oakland children's hospital and an MRI was done and that's when we found out it grew back! Now she is on tafinlar oral chemo! I am so scared for her and would love to hear from others that have this rare form of brain tumor! Thank you danielle

Jump to this post

@JustinMcClanahan
She has been nauseated every morning! Sore joints and tired. She had hand foot syndrome on bottom off feet but that has seem to go away!

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lmp1 | @lmp1 | Aug 29, 2017

@daniellemarie
Our MRI yesterday showed more growth in tumor. We really had the feeling it had because my daughters headaches and other problems have worsened again. In 3 months time the tumor is growing aggressively. Tomorrow we consult with the Drs and they have told us they have "a plan"
We are all very worried and scared as you know. My only wish would be to take this burden from her. I hate cancer!

REPLY
4 replies
daniellemarie | @daniellemarie | Aug 29, 2017
In reply to @lmp1 "@daniellemarie Our MRI yesterday showed more growth in tumor. We really had the feeling it had..." + (show)
@lmp1

@daniellemarie
Our MRI yesterday showed more growth in tumor. We really had the feeling it had because my daughters headaches and other problems have worsened again. In 3 months time the tumor is growing aggressively. Tomorrow we consult with the Drs and they have told us they have "a plan"
We are all very worried and scared as you know. My only wish would be to take this burden from her. I hate cancer!

Jump to this post

I have been trying to reply and send you messages I don't know why I can't

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daniellemarie | @daniellemarie | Aug 29, 2017
In reply to @lmp1 "@daniellemarie Our MRI yesterday showed more growth in tumor. We really had the feeling it had..." + (show)
@lmp1

@daniellemarie
Our MRI yesterday showed more growth in tumor. We really had the feeling it had because my daughters headaches and other problems have worsened again. In 3 months time the tumor is growing aggressively. Tomorrow we consult with the Drs and they have told us they have "a plan"
We are all very worried and scared as you know. My only wish would be to take this burden from her. I hate cancer!

Jump to this post

I will be praying for you and your daughter! Danica has been on her oral chemo praying it's shrinking tumor! Her next MRI is sept 20th! Let me know how plan goes please

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 29, 2017
In reply to @lmp1 "@daniellemarie Our MRI yesterday showed more growth in tumor. We really had the feeling it had..." + (show)
@lmp1

@daniellemarie
Our MRI yesterday showed more growth in tumor. We really had the feeling it had because my daughters headaches and other problems have worsened again. In 3 months time the tumor is growing aggressively. Tomorrow we consult with the Drs and they have told us they have "a plan"
We are all very worried and scared as you know. My only wish would be to take this burden from her. I hate cancer!

Jump to this post

Hi @daniellemarie, your messages are being posted. Please send me an email using this form https://connect.mayoclinic.org/contact-a-community-moderator/
I can help you get to the bottom of the issue.
Colleen

PS: I deleted your cell phone number. We recommend not sharing personal contact information on the public forum, but rather using the private message function.

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lmp1 | @lmp1 | Aug 29, 2017

@daniellemarie not sure why it's not letting you message me. I will let you know what happens. Hoping to hear from @audrapopp also and see how she is doing.

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1 reply
daniellemarie | @daniellemarie | Aug 30, 2017
In reply to @lmp1 "@daniellemarie Our MRI yesterday showed more growth in tumor. We really had the feeling it had..." + (show)
@lmp1

@daniellemarie
Our MRI yesterday showed more growth in tumor. We really had the feeling it had because my daughters headaches and other problems have worsened again. In 3 months time the tumor is growing aggressively. Tomorrow we consult with the Drs and they have told us they have "a plan"
We are all very worried and scared as you know. My only wish would be to take this burden from her. I hate cancer!

Jump to this post

@colleenyoung
Thank you so much

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daniellemarie | @daniellemarie | Aug 30, 2017
In reply to @lmp1 "@daniellemarie not sure why it's not letting you message me. I will let you know what..." + (show)
@lmp1

@daniellemarie not sure why it's not letting you message me. I will let you know what happens. Hoping to hear from @audrapopp also and see how she is doing.

Jump to this post

@lmp1 @audrapopp
Prayers for you both

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