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!

@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 @daniellemarie, welcome to Connect and thank you for sharing your concerns with your 8-year-old daughter. I can only imagine how scary this situation must be. If you notice, I merged your discussion with an existing discussion on PXAs and would like you to meet the other members who have also discussed having a daughter with this tumor. If you are replying by email, I suggest clicking on VIEW & REPLY at the bottom of this notification so you can see the whole discussion and hopefully learn from some of the other posts.

@daniellemarie, how is your daughter responding to the chemo treatment?

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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 thank you for writing! She started 5 days ago. Yesterday her bottoms of her feet have been hurting her to walk or touch which could be side effect to chemo. She also has hip pain which sore joints are a side effect as well. We go back to Oakland sept 20th to have MRI of brain and spine! She has a positive attitude but scared! Her question to her oncologist was “will I die” so inside she has her fear like I do.

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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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@daniellemarie I’m so sorry to hear about your daughter. I know how you feel. I’m sure you have read about my daughter. She is 25, turns 26 Wednesday. I have read a lot about PXA and although rare it says it’s more common is children. But saying that the cases I have read about so far have been young adults. My thoughts are they may not know as much about these tumors because they are rare, of course I’m not a doctor by no means. I’m just a very worried parent.
It’s been 6 months since my daughters surgery and we haven’t started any treatment as of yet. It is growing back and they have sent it for more test. They are talking about chemo and radiation now. They are gonna see the results of the pathology and decide on types of treatment. Meaning what kind of chemo etc…
If you don’t mind telling me…
How long after surgery untill your daughter started radiation? How long after surgery till they found it growing back?
I have read cases that the tumor waited years to grow back. I think maybe if they manage to get all of the tumor that helps. My daughters tumor was the size of a golf ball on the frontal left side. By the time they found it it had swelled her brain so much that the swelling was intruding into the right side of her brain. It took a few months for the swelling to shrink for them to be able to see if they had gotten all of the tumor. They hadn’t sadly and of course it’s growing.
I’ll be thinking of you and her. Many Prayers!

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I am so sorry! The unknown is very scary! I had wrote you a long message but for some reason it would not let me send ugh

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@audrapopp

I have had 6 surgeries and feel very lucky to have had that option. The most recent was March 31, 2017 and completely cleared all traces of recurrent tumor, scar tissue from previous surgery and radiation necrosis. The original plan was to resume the BRAF inhibitor drugs Tafinlar and Mekinist combination after surgery (in clinical trials these drugs are literally shrinking the tumors), but I’m currently not on any treatment as my Neuro-oncologist Dr. Buckner says there is literally “nothing to treat” and I’ve previously had my maximum radiation treatment. I just had an MRI Monday and excited to say everything remains clear! I will have another MRI in 3 months, and have had previous MRI’s scheduled anywhere from 1-6 months all dependent upon current treatment, symptoms or tumor recurrence. For example, after this last surgery my MRI’s were day after surgery, one month postop, than 2 months, now as everything looks stable will have my next in 3 months.
PXA’s typically return in the same area of the brain, most tend to be near the outer edge of the brain in the parietal/temporal area. It is actually very rare for the PXA to be found in the cerebral spinal fluid, which could than place it in the spine. There are only 2 known reported cases worldwide and I actually have personally met one of them as she is being treated at Mayo in Rochester, MN too and we have the same Radiation-Oncologist Dr. Nadia Laack.
I hope all this helps.
I’m certain your Neuro-oncologist will address the acoustic neuroma as well. I hope you walk away from your July 19th appointment with all questions answered and a plan you all feel good about.

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@audrapopp my daughter is 8 years old been diagnosed with pxa. She under went surgery march 25th to remove tumor. They had left Lil pieces which were under blood vessels to dangerous to touch. She then started radiation 6 weeks later and by the time radiation started to do it job her tumor grew. We recently were air lifted back to Oakland children’s hospital due to seizures and that’s when they did MRI and found it growing. She is now on tafinlar oral chemo and seizure meds kepra. We don’t go back for MRI till sept 20th! Praying this chemo is shrinking her tumor

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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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@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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@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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@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

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
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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@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!

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@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!

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

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@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!

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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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@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!

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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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@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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@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!

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@colleenyoung
Thank you so much

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@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.

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@lmp1 @audrapopp
Prayers for you both

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