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Pleomorphic xanthoastrocytoma tumor (Pxa): help
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!
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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.
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.
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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1 ReactionThanks @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!
@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
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.
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.
@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.
Good luck to you guys to.
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!