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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This will be the first time he will be on chemo, I am not sure how long it will take, the doctor office tells me about 3 to 4 weeks.He recently had an MRI and it came out clear. I will keep you updated.

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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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I wanted to share my lengthy, over 2 month, insurance process I endured for the drugs Tafinlar & Mekinist before ultimately receiving the medication through the Novartis Patient Assistance Foundation in January of 2017. Novartis is the maker of the drugs. My Anaplastic PXA Brain Tumor harbors the BRAF V600e mutation that these drugs target however they are still not yet FDA approved for brain cancer but they are for Melanoma with the same mutation, so it is very likely most insurance companies will try to deny these targeted drugs for brain cancer treatment as the cost is about $23K per month in the United States.
I wish I would have known what the process of approval of these meds looked like when the decision was made to start them for treatment.
1. My Neuro Oncologist placed the priority order with our private insurance BC/BS and they had 72 hours (business hours) to respond and denied the order because they are not FDA approved for my diagnosis
2. Appealed to insurance company and they had another 30 days before needing to make a final decision. My physician sent in a written statement along with my medical records and any other supporting evidence-other case reports, clinical trial results, etc. and again was denied.
3. Next process with insurance company was to have an independent case review by another physician, (selected by the insurance company.) my Neuro Oncologist again submitted everything from step 2 along with a personal call to plead my case as I’ve exhausted other chemotherapy options. Again it was unfortunately denied.
4. With denial process steps of private insurance company complete, the Novartis Patient Assistance Foundation application was fairly simple, needing patient financial information and physician statements than approved quite quickly..It took about a week and was approved for 1 year of the medication at no cost and delivered directly to my home. If needing for longer duration will need to resubmit application.

I’m hoping as more proof of benefit of these targeted drugs is available that insurance companies will approve, but very grateful for the Novartis Patient Assistance Foundation to come through in desperate situations to continue to help patients like myself. Undue waiting for the answer on needed medications to properly continue treatment plan course is tremendously hard because it is so out of our control as patients & caregivers. I definitely kept calling throughout the process for updates…but still so discouraged at the system. The brain tumor and treatment sometimes seems much easier than all the unexpected hoops we often must jump through. Hoping this helps shed light, my advice is when It is definitively known you will need these medications, work with your oncologist office to get all the necessary paperwork in everywhere timely and keep a log/timetable of the process, who you talked to, what was said, what’s needed, etc. Good Luck @csaylor

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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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Great information, Audra. You’re always a wonderful resource. Thanks for sharing your knowledge and experience. C.

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Am I allowed to post my email here?

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I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.

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@feb1973

Am I allowed to post my email here?

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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.

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@lmp1

I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.

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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?

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@lmp1

I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.

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@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.

Liked by Leonard

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@lmp1

I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.

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@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?

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@lmp1

I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.

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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".

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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?

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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 …

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@kanaazpereira

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?

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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?

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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.

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@javierhortal

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 …

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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 …"

Liked by javierhortal

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