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!

Hi all, my daughter is now going through a tough period after her recent major operation. As I might have said before we have some knowledge of targetted therapies so if your tumour, like my daughter's, has the BRAF 600E mutation please do ask about our experience. Also FYI with her oncologist's blessing, my daughter has just started on a treatment in parallel using Sativex (a licensed/approved cannabis based medicine more commonly used for MS sufferers) and CBD oil. The main reason for this is there is emerging evidence (showing promise, but not yet conclusive) that this may limit the growth of some tumours, or shrink them, particularly if taken in parallel with Temozolomide (which my daughetr is also on). By consensus there also seems little or no downsides plus in some cases it might also help with symptom management depending on your issues. Ref this we live in the UK and it was not easy to find how to do this and what to get, but we managed to get it prescribed formally by a doctor. I guess we'll never know whether it is effective or not, since she is on other meds in parallel, but we concluded it was worth trying. All the best to everyone, David.

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@dgruk

Hi all, my daughter is now going through a tough period after her recent major operation. As I might have said before we have some knowledge of targetted therapies so if your tumour, like my daughter's, has the BRAF 600E mutation please do ask about our experience. Also FYI with her oncologist's blessing, my daughter has just started on a treatment in parallel using Sativex (a licensed/approved cannabis based medicine more commonly used for MS sufferers) and CBD oil. The main reason for this is there is emerging evidence (showing promise, but not yet conclusive) that this may limit the growth of some tumours, or shrink them, particularly if taken in parallel with Temozolomide (which my daughetr is also on). By consensus there also seems little or no downsides plus in some cases it might also help with symptom management depending on your issues. Ref this we live in the UK and it was not easy to find how to do this and what to get, but we managed to get it prescribed formally by a doctor. I guess we'll never know whether it is effective or not, since she is on other meds in parallel, but we concluded it was worth trying. All the best to everyone, David.

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So good to hear from @dgruk. Thanks for taking the time when you are busy supporting your daughter. When was the operation? What challenges is she (and are you) facing at the moment?

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A summary of where we are. My daughter (who is 25) had her 4th operation on her right temporal lobe at the end of August, lasting 11 hours! She has recovered from this in a physical sense but as a result now has a hemianopia (loss of half her sight) which is a big challenge. She is also quite tired pretty much all the time, presumably because of the Temozolomide. Yesterday she developed a sore throat so my wife is currently at the docter's with her and fingers crossed that she doesn't need antibiotics because, as we understand it, she may need to go into hospital to have these intraveneously (which none of us wants). The other worrying thing at present is that she was supposed to start on Avastin (another melanoma approved drug) last week but there are issues with getting approval for this. Our insurer initially said no, presumably because it is off-licence for brain tumours. So as I mentioned it's quite hard at the moment. But my daughter's attitude is great and that factor alone makes it so much easier all round. ATB David.

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@dgruk

A summary of where we are. My daughter (who is 25) had her 4th operation on her right temporal lobe at the end of August, lasting 11 hours! She has recovered from this in a physical sense but as a result now has a hemianopia (loss of half her sight) which is a big challenge. She is also quite tired pretty much all the time, presumably because of the Temozolomide. Yesterday she developed a sore throat so my wife is currently at the docter's with her and fingers crossed that she doesn't need antibiotics because, as we understand it, she may need to go into hospital to have these intraveneously (which none of us wants). The other worrying thing at present is that she was supposed to start on Avastin (another melanoma approved drug) last week but there are issues with getting approval for this. Our insurer initially said no, presumably because it is off-licence for brain tumours. So as I mentioned it's quite hard at the moment. But my daughter's attitude is great and that factor alone makes it so much easier all round. ATB David.

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hi David,
Thanks so much for posting your experiences. I’ve been trying to find others who are going through this too, but there aren’t that many. My wife currently is battling PXA and is about to have her 2nd operation. The radiation and temodar didn’t seem to do much. Looking at other options. I will ask about what your daughter has used. Mind if we keep in touch?

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Kodabear, yes of course, please ask anytime. David.

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@dgruk

Kodabear, yes of course, please ask anytime. David.

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@dgruk is your daughter tired all the time? Wondering how long it takes for the tiredness to decrease after the initial radiation and temodar treatment. My wife is constantly tired. We’re hoping she can eventually do more activities outside again.

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My daughter had radio and chemo at different times, years apart, so our experience was different. Radiotherapy tiredness by itself lasted for about a month after. She has only done a few Temodal cycles so far hence we have limited experience but so far the tiredness is much less than it was for radiotherapy. ATB David.

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It is a real nasty beast. I was diagnosed in October with the same glio grade 4. I've done radiation and my 1st round of chemo pills (temozolomide). I will have my MRI January 17th to see if a new tumor has started setting up house, then will go on double temozolomide for 5 days with 3 weeks off. Have you looked into the new Optune device that is helping a lot of people live longer. I will start the new device and of February 2019. If you are on Facebook join a Glioblastoma group or an Optune group. Great information from others sharing. I wish your daughter good luck and send prayers her way.

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@dgruk

My daughter had radio and chemo at different times, years apart, so our experience was different. Radiotherapy tiredness by itself lasted for about a month after. She has only done a few Temodal cycles so far hence we have limited experience but so far the tiredness is much less than it was for radiotherapy. ATB David.

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Thanks @dgruk. My wife just had her second surgery and removed all of it this time. Regression of coordination and inability to think clearly, but was ok. Now she has a bacterial infection from the surgery. It’s so hard!

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@bjh369

It is a real nasty beast. I was diagnosed in October with the same glio grade 4. I've done radiation and my 1st round of chemo pills (temozolomide). I will have my MRI January 17th to see if a new tumor has started setting up house, then will go on double temozolomide for 5 days with 3 weeks off. Have you looked into the new Optune device that is helping a lot of people live longer. I will start the new device and of February 2019. If you are on Facebook join a Glioblastoma group or an Optune group. Great information from others sharing. I wish your daughter good luck and send prayers her way.

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@bjh369, wishing you the best! We were told about the optune device, but my wife didn’t think she would use it enough. I’m glad there are options out there. Thanks for sharing that info! I hope it works for you. Please continue sharing. We are all in this together. ATB

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@bjh369

It is a real nasty beast. I was diagnosed in October with the same glio grade 4. I've done radiation and my 1st round of chemo pills (temozolomide). I will have my MRI January 17th to see if a new tumor has started setting up house, then will go on double temozolomide for 5 days with 3 weeks off. Have you looked into the new Optune device that is helping a lot of people live longer. I will start the new device and of February 2019. If you are on Facebook join a Glioblastoma group or an Optune group. Great information from others sharing. I wish your daughter good luck and send prayers her way.

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Welcome to Connect, @bjh369.
I thought I’d post some more information about the Optune device (wearable medical device that delivers electrical fields through the scalp) and other innovative therapies being researched:
https://www.nature.com/articles/d41586-018-06713-6

Here are a few points to keep in mind:
– The company-sponsored study enrolled only patients who were well enough to start chemo after surgery and radiation. Even for these participants, the electric fields were not a cure. Only 16 of the original 466 patients were alive by the end of the study.
https://jamanetwork.com/journals/jama/fullarticle/2475463
–The improvement is modest: The median survival for patients who were randomly assigned to use the device while getting the chemo drug temozolomide lived 21 months compared with 16 months for those assigned to receive chemo without the device.
However, the latest data show that the two-year survival rate for the full group of patients was 43 percent for those using the device while getting temozolomide, compared with 31 percent for those only receiving chemo. The five-year rate was 13 percent vs. 5 percent.
– Optune has several components. The device has a generator that can be plugged into an electrical outlet or powered by a battery and four adhesive patches taped in place on a patient's shaved scalp. Each patch has nine electrode discs.
– The cost can be prohibitive since it’s $21,000 per month. Most U.S. insurers cover it but Medicare does not. https://www.statnews.com/2017/12/19/glioblastoma-electric-fields-cap/

I have to admit that it’s exciting to know about such advancements…for a patient with a fast-growing tumor, extending life with minimal side effects can mean the world. I wish you all success and I sincerely hope you’ll keep us updated with your progress, @bjh369.

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@kanaazpereira

Welcome to Connect, @bjh369.
I thought I’d post some more information about the Optune device (wearable medical device that delivers electrical fields through the scalp) and other innovative therapies being researched:
https://www.nature.com/articles/d41586-018-06713-6

Here are a few points to keep in mind:
– The company-sponsored study enrolled only patients who were well enough to start chemo after surgery and radiation. Even for these participants, the electric fields were not a cure. Only 16 of the original 466 patients were alive by the end of the study.
https://jamanetwork.com/journals/jama/fullarticle/2475463
–The improvement is modest: The median survival for patients who were randomly assigned to use the device while getting the chemo drug temozolomide lived 21 months compared with 16 months for those assigned to receive chemo without the device.
However, the latest data show that the two-year survival rate for the full group of patients was 43 percent for those using the device while getting temozolomide, compared with 31 percent for those only receiving chemo. The five-year rate was 13 percent vs. 5 percent.
– Optune has several components. The device has a generator that can be plugged into an electrical outlet or powered by a battery and four adhesive patches taped in place on a patient's shaved scalp. Each patch has nine electrode discs.
– The cost can be prohibitive since it’s $21,000 per month. Most U.S. insurers cover it but Medicare does not. https://www.statnews.com/2017/12/19/glioblastoma-electric-fields-cap/

I have to admit that it’s exciting to know about such advancements…for a patient with a fast-growing tumor, extending life with minimal side effects can mean the world. I wish you all success and I sincerely hope you’ll keep us updated with your progress, @bjh369.

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I've had my surgery, did my radiation and 1st round of chemo & plan to start on Optune the later part of February. Plus mid January will be on double chemo to 5 days with 3 weeks off. So far I'm in great health.
I joined a Optune group on Facebook and they offer a lot of tips & advice.

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@kodabear

Thanks @dgruk. My wife just had her second surgery and removed all of it this time. Regression of coordination and inability to think clearly, but was ok. Now she has a bacterial infection from the surgery. It’s so hard!

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@kodabear, I understand, it's tough and if our experience is anything to go by it just seems to remorselessly go on and on. This affects us all and I hope you have someone to properly talk things through with. Here in the UK there are counsellers who help – I have used this service and I am sure I am better for it. My daughter also found it re-assuring that someone was helping me because it at times I was reaching my limit. ATB David.

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@kodabear

@bjh369, wishing you the best! We were told about the optune device, but my wife didn’t think she would use it enough. I’m glad there are options out there. Thanks for sharing that info! I hope it works for you. Please continue sharing. We are all in this together. ATB

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Good luck to you guys to.

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@dgruk

@kodabear, I understand, it's tough and if our experience is anything to go by it just seems to remorselessly go on and on. This affects us all and I hope you have someone to properly talk things through with. Here in the UK there are counsellers who help – I have used this service and I am sure I am better for it. My daughter also found it re-assuring that someone was helping me because it at times I was reaching my limit. ATB David.

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I definitely should find counselors. I feel like I am going to lose it soon. My wife is currently going through a tough time and it is really tough to watch helplessly. She had a craniotomy, then had to return to the hospital because of a bacteria infection. Another surgery and a few complications make this seem like a never ending battle. We have hope and a lot of great specialists working hard for us. Wishing a better happy new year for all of us!

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