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Pleomorphic xanthoastrocytoma tumor (Pxa): help
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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So now we have another surgery. This time an aggressive surgery to get as much tumor as they can. Of course they thought they had gotten all of it in February. I'm very very concerned. They said 8-10% chance of speech loss and paralysis on left side. Sure that is a low chance but doesn't make me worry any less. Surgery in 2 weeks.
Just read your posting. I will be praying for a positive outcome for you. I was recently diagnosed with a brain tumor. Meningioma in my R. frontal lobe. Having followup MRI shortly. I am told to watch and wait, but not comfortable with that approach.
Lots of prayers and faith
@daniellemarie how did your daughters MRI results turn out? My daughter had surgery last Monday. They took a tumor out the size of a lemon. This time recovery has been harder and we don't know what treatments are yet. We go Wednesday to find out. They told us PXA grade 3. I feel it has been this the entire time since it grew back so aggressive. The MRI after surgery still showed a small spot left. Hope to hear from you soon with good news. Lisa
@lmp1
I hope her recovery is fast and the treatment works! My thoughts and prayers are with you both. Danica's is pxa grade 3 too. Her chemo is working it's not growing thank god
@daniellemarie I wanted to check up on your daughter and see how she is doing? My daughter started radiation and chemo. Her feet are hurting her already and she is been somewhat sick. Has your daughters hair fallen out? Hope she is dong well. Thinking of her.
@lmp1
@lmp1 awe she’s good! Danica’s Feet are bad and joints! Her hair and eyebrows did fall out but on the side and around back. Her mri in sept turned out with good news that tumor was not growing so she has another mri December. Make a wish comes Sunday to grant her her wish to go to Disneyland resort in Hawaii. Hang in there. I hope this treatment works for your daughter
@daniellemarie glad to hear she is doing ok. Have a great trip!
@lmp1 and @daniellemarie, I was just thinking about you and your daughters. How are you all doing?
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