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Sun, May 5 10:29pm · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

I’m very sorry for your loss, Danielle. I hope you and your family will find some sort of peace soon. I, myself, have so much anxiety and fear from watching my wife suffer not knowing what the future holds. I really want to thank you for sharing with us as we are all going through this horrific journey with our loved ones. If you ever need to talk we are here for you.

Sat, May 4 3:46pm · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

Hey has anyone had problems with a wound not healing up? And CSF accumulating in the head causing ballooning or pouching? Just curious if there are any methods used that worked for them. Thanks.

Sat, May 4 3:44pm · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

Sorry to hear that eJacobs. My wife’s situation is similar to David’s daughters one. She is still in the Temodar phase. I hope your friend can find something that works, we all do. All the best, Koda.

Fri, Mar 29 12:42pm · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

Imp1 and David, I’m glad both of your daughters are doing well. My wife, I am glad to say is fairly stable too. She had a heck of a time recovering from her last round of surgeries, but is now trying to figure out what she can and can’t do both mentally and physically. Thanks for sharing. It’s good to know what my wife is going through is common like the weight gain from the steroids. She’s been off of them for a little less than a month but still swollen looking around the face and the neck. Has headaches occasionally, gets confused from time to time and has to just stop and refocus. My wife just had an MRI last night. Hoping that the results are the same. Ever since January she has become a hard stick. Everyone has an extremely hard time drawing blood or putting in an IV. That is a nightmare for her in itself. I guess it is from the Temodar? I hope to eat more good reports from you guys. Makes me feel hopeful and very happy. I will try to do the same. My wife is supposed to take her third round of Temodar in a few days. She gets extremely tired too after a few days of taking it and lasted for about a week and a half. Her energy levels are better now, but I need to remind her to eat. She would sleep for half the day if she could. 😉 the best to you all!

Dec 31, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

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!

Dec 30, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

@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

Dec 30, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

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!

Dec 21, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

@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.