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!

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.

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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.

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@lmp1

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.

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Lots of prayers and faith

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@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

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@lmp1

@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

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@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

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@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.

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@lmp1

@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.

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@lmp1

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@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

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@daniellemarie glad to hear she is doing ok. Have a great trip!

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@lmp1 and @daniellemarie, I was just thinking about you and your daughters. How are you all doing?

Liked by daniellemarie

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@colleenyoung

@lmp1 and @daniellemarie, I was just thinking about you and your daughters. How are you all doing?

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Thank you for asking @colleenyoung
My daughter has just finished radiation and chemo. She will have MRI in January and start chemo again. The biggest development is her tumor they took out in September is now a Glioblastoma grade IV. So we are very worried about this. She is very sick still from chemo and hasn’t ate in over a month. She is trying to use this break from chemo to enjoy Christmas with her children.

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@colleenyoung

@lmp1 and @daniellemarie, I was just thinking about you and your daughters. How are you all doing?

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I can imagine you’re all worried about these developments. How frightening for you as a mom and for her as a mom. You and your daughter might appreciate the tips in this blog from the Mayo Clinic Cancer Education Center that @meganroessler wrote:
– I Don’t Want to Talk About my Cancer During the Holidays https://connect.mayoclinic.org/newsfeed-post/i-dont-want-to-talk-about-my-cancer-during-the-holidays/

Will you be with your daughter and grandkids from the holidays, too?

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@colleenyoung

@lmp1 and @daniellemarie, I was just thinking about you and your daughters. How are you all doing?

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@colleenyoung hello Danica is just getting over flu and strep throat so her mri this week is rescheduled for next weds and results next Friday

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@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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Hello, my name is Carolyn, at the age of 16 my son John was diagnosed with PXA grade3, in 2014. The surgeon remove the tumor and he had radiation treatments. John`s MRI show no signs of the tumor until October 2017. His doctor wants to try a combination of 2 different types of chemo in pill form, they are Mekinist and Tafinlar, waiting on insurance to approve. I hope all goes well for your daughter, will keep here in my prayers.

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@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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Hello @csaylor, welcome to connect. I'm sorry to hear that your sons struggle with PXA is going to need chemo again. Has he experienced any symptoms? or was it a routine check up that showed signs again?
I would like to introduce you to @audrapopp who talks about Mekinist and Tafinlar here in this post- https://connect.mayoclinic.org/discussion/pxa-help/?pg=1#comment-63994. How long does it usually take for insurance to approve something like that?

I'm sending you some super power mom strength. Please keep us updated on how he is doing.

Liked by audrapopp

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