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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Hola daniellemarie. Te escribo wn español. Veo ahora este post del año pasado. En el blog que modero he reflejado información sobre el tumor. Quimio como la temodozolamida o clinicals trials de braf (dabrafenib, vemurafenib) junto con otros inhibidores podrían ser efectivos…
El blog del xantoastrocitoma.

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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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Thanks for your words. We're on touch.
Any information about advances in the treatment or research of xanthoasyrocytoma interests me.
A greeting.

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@minnniceguy

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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Hi. I hope your daughter overcomes the tumor. Today there are great advances with the new treatments. In the blog of xantoastrocitoma you can find various information.
I wish the best for you

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@minnniceguy

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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I'm so sorry to learn about your battle with this cancer, @minnniceguy. I thought you might be interested in reading this journal article about the successful use of BRAF inhibitors in oncology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5977279/

Here's some information about three main BRAF inhibitors Vemurafenib, Dabrafenib, Sorafenib:
https://www.mayoclinic.org/drugs-supplements/vemurafenib-oral-route/description/drg-20075147
https://www.mayoclinic.org/drugs-supplements/dabrafenib-oral-route/description/drg-20061178
https://www.mayoclinic.org/drugs-supplements/sorafenib-oral-route/description/drg-20068145

I'd also like to introduce you to @audrapopp @meg4434 @ecdhope @daniellemarie, who've shared their or their loved ones experiences with these targeted therapies. @minnniceguy, could you share more about the side effects that concern you the most?

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Update on my daughter. She started trial in June and her tumor had grown substantially. We had first MRI last Wednesday since she started clinical trial and the results are amazing. The tumor has shrunk a lot so she will continue on with trial. She is feeling pretty good and we are so happy with the results. The fear up to getting results was getting to everyone. The night before I had a panic attack. My anxiety has been just terrible.
Also I would like to update on tumor- when 1st diagnosed she had a PXA the 2nd tumor was called a glioblastoma grade 4. There was one report that still said a PXA but 2 reports, one from Mayo Clinic said it was gbm. I know the odds with this evil cancer. They aren’t very good odds of surviving long. I so hope this trial is the miracle all need who have this evil cancer.

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minnniceguy: ref PXA anaplastic astrocytoma grade 3, my daughter (aged 25) has had this for the last 4 years with 4 ops and radiotherapy etc. THE reason she is still with us is because she has the BRAF mutation and successfully took intially Dabrafenib and then later Dabrafenib with Trametinib. We reckon this has gave her at least another 2 years. Unfortunately these drugs are now not working so well so she is off them for a 6 month 'holiday'. But please note she had minimal side effects during this period and lived pretty much a normal life. So, if our experience is anything to go by, this is certainly worth a try. All the best with it, David.

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@kanaazpereira

I'm so sorry to learn about your battle with this cancer, @minnniceguy. I thought you might be interested in reading this journal article about the successful use of BRAF inhibitors in oncology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5977279/

Here's some information about three main BRAF inhibitors Vemurafenib, Dabrafenib, Sorafenib:
https://www.mayoclinic.org/drugs-supplements/vemurafenib-oral-route/description/drg-20075147
https://www.mayoclinic.org/drugs-supplements/dabrafenib-oral-route/description/drg-20061178
https://www.mayoclinic.org/drugs-supplements/sorafenib-oral-route/description/drg-20068145

I'd also like to introduce you to @audrapopp @meg4434 @ecdhope @daniellemarie, who've shared their or their loved ones experiences with these targeted therapies. @minnniceguy, could you share more about the side effects that concern you the most?

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Good Morning.
I would like to show in my blog of xanthoastrocytoma information about this chat.
You give me permission for it?
Thank you.
Javier Hortal

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@javierhortal

Good Morning.
I would like to show in my blog of xanthoastrocytoma information about this chat.
You give me permission for it?
Thank you.
Javier Hortal

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Indeed, you have permission, @javierhortal. I will also connect with by private message.

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I had surgery back in june of this year to remove a tumor, I waited 3 weeks for pathology and found out I had a pleomorphic xanthoastrocytoma. They've been watching the area for any regrowth and watching two other tumors on my brain but thankfully everything looks okay.

20180718_211825

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@maddymonahan

I had surgery back in june of this year to remove a tumor, I waited 3 weeks for pathology and found out I had a pleomorphic xanthoastrocytoma. They've been watching the area for any regrowth and watching two other tumors on my brain but thankfully everything looks okay.

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Maddie, I got your message. My daugther's tumour is in her right temporal lobe, the same as you. This is fortunate since she has had 3 major surgeries but still functions well. Incidentally the picture you posted caused me to do a double-take since you closely resemble a cross between my wife and my daughter! All the best with it, dgruk

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Hey @Imp1 how is your daughter doing on the clinical trial? My wife has PXA grade 3 and finished her radiation and temodar treatment. mRI shows it recurring and I’m looking for other treatments. She was feeling pretty good during the treatment but now that she’s been off of it for. Few weeks, her initial symptoms are coming back, And in addition she is experiencing constant dizziness. I don’t know what to do about the dizziness. Thanks to all of you for sharing your stories in these feed. It helps to know we are not alone in this. 😢

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Bevacizumab, irinotecan, temozolomide, tyrosine kinase inhibition, and MEK inhibition are effective against pleomorphic xanthoastrocytoma regardless of V600E status… You should investigate about these treatments.
Hope everything goes well

Liked by Jamie Olson

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Also about dabrafenib and vemurafenib

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@javierhortal

Also about dabrafenib and vemurafenib

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Thanks Javier!

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@kodabear

Hey @Imp1 how is your daughter doing on the clinical trial? My wife has PXA grade 3 and finished her radiation and temodar treatment. mRI shows it recurring and I’m looking for other treatments. She was feeling pretty good during the treatment but now that she’s been off of it for. Few weeks, her initial symptoms are coming back, And in addition she is experiencing constant dizziness. I don’t know what to do about the dizziness. Thanks to all of you for sharing your stories in these feed. It helps to know we are not alone in this. 😢

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Hi @lmp1 @audrapopp @csaylor @daniellemarie @javierhortal @minnniceguy @dgruk and @maddymonahan. I'd like to introduce you to the newest addition to the PXA group. Please meet @kodabear, whose wife has grade 3 pleomorphic xanthoastrocytoma.

It has been a while since hearing from most of you. It would be great to get a quick update and continue our circle of support and strength.

Liked by kodabear

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