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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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Danielle, pasé por la pérdida de mi hijo hace ahora tres años. Comprendo perfectamente lo que dices. Nosotros estuvimos en un grupo de duelo y fue de gran ayuda. Yo también me sentí muy culpable de no haber podido hacer que mi hijo sobreviviera. Con el tiempo me he ido liberando de la culpa y ahora me queda un hermoso recuerdo de mi hijo, de lo vivido, siempre lo siento cerca, aunque a veces siento punzadas de dolor. Deja que te llegue su fuerza y que te acompañe en este camino que recorrerás. Un abrazo.
Danielle, I went through the loss of my son three years ago now. I understand perfectly what you say. We were in a grieving group and it was very helpful. I also felt very guilty about not being able to make my son survive. Over time I have been free of guilt and now I have a beautiful memory of my son, of what I have lived, I always feel close, although sometimes I feel pangs of pain. Let your strength reach you and accompany you on this path you will travel. A hug.
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1 Reaction@javierhortal I am so sorry for your loss 💔🙏🏻 This is the hardest thing I have ever had to deal with and the worse pain ever. I miss her so much. She’s our “Princess Warrior” of Sonoma county in California. Thank you for positive words and reaching out to me. We have a Team Danica page that has shown her journey and I continue to update it when we do things for her or honor her. Please go follow if you would like. Thank you again
@csaylor
Hello how is your little one doing?
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1 ReactionHi Audra, hope you still follow this forum. My 23 year old son just had a PXA tumor removed. Waiting to get the moleculars back, so limited information at the moment. Would love to hear your experience and any advice or resources you would be willing to share. Thank you!
jakejta, I have some experience similar to Audra, fingers crossed for your son's diagnosis. My daughter has had a Grade 3 PXA for 6 years and is in her 20s. She has had multiple operations, radio, chemo, targeted therapy and re-purposed drugs and is still with us albeit with relatively minor disability. When you know the situation I would be happy to share our experience if that would help. Best wishes, David.
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1 ReactionHi @jakejta, like @dgruk, I'd like to get an update about your son once you get the test results back after surgery. When do you expect to get them? How is your son doing post surgery?
Hi All, it’s been a while since I posted... mid 2018. My wife is doing okay after many complications, but she gets occasional numbness and proprioception issues on her right side along with headaches occasionally. Does anyone experience this too? David, your daughter? Luckily it goes away the next day. It scares her each time.
kodabear, regarding headaches, we have found that they come and go. Other than when recovering from surgery (which for my daughter was another matter) we have found that headaches come and go for periods of a day to a few weeks here and there. Whilst one doesn't like to take too many pain killers, we have learned that this what they are there for, and nursing staff are usually most helpful in advising about their use. Regarding mobility, 3 months ago my daughter started getting reduced mobility in her L side. This was almost certainly due to the re-growth of the tumour which is in and around her Right Temporal Lobe (which controls the L side of the body). 6 weeks ago this had worsened to a relatively bad limp in her L leg (she could only walk say 200m) and her L arm had lost almost all mobility, pretty much just hanging. Perhaps different to your situation though was that she had/has full sensation, it's just that she was unable to move her L limbs normally. She then started some sessions, over video, with a physio who specialises in neurological impairment and this has worked well. If she had 100% mobility in her L side 3 months ago I would say this went down to about 20%, but it is now back up to about 50% and still improving week on week. It sounds like your situation is different (re the loss of sensation) but even so I would still recommend speaking to a neurological consultant or even to a neurological physio direct - I understand this is a common sort of problem they deal with. I hope that helps. All the best with it, David.
Thanks David! I appreciate your sharing your daughter’s experiences. It’s makes me worry a little less with her occasional headaches. Her last one which was a couple of days ago was the worst one with vomiting and a sensitive scalp, but it passed. She used Tylenol and it helped enough. Opposite of your daughter’s situation, My wife’s tumor was in her left temporal Lobe. She also uses some use of the R side limbs as well but can still walk. Her hand loses maybe 30-40% Functionality. Question. Did your daughter have any problems with her skull cap from the surgeries? Infections, etc.
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1 Reactionkodabear, we had no problems with her head bandaging after drain removal, other than perhaps perhaps a bit of wound 'weeping'. We were advised regular and meticulous changing is important. Sickness, usually accompanied or preceded by a headache, was a feature immediately after operations, reducing over a couple of months. She still has more headaches than the average person, but not excessively so. ATB David.
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