Pleomorphic xanthoastrocytoma tumor (Pxa): help

@colleenyoung thank you for reaching out to me. Yes it has been a long But yet very short journey.. she was my rock, strength and happiness. She was my special one and our bond and relationship was something fierce. I feel like I didn’t do my job as a mother and protect her or save her from this nasty cancer. I still can’t believe that she’s gone. I can’t see my life with out her. I just want to be with her... I cry to her and ask for her strength to get me through this. It’s a nightmare..

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.

This will be the first time he will be on chemo, I am not sure how long it will take, the doctor office tells me about 3 to 4 weeks.He recently had an MRI and it came out clear. I will keep you updated.

First, thank you Colleen for connecting us... because it is such a rare tumor it is difficult, if ever to connect with others and I am happy to be an advocate, support and here for any questions you or your daughter may have. First of all~ Complete surgical resection is currently the best treatment option for this tumor type, that being said~ your best defense is truly "the best neurosurgeon" you can find! If I understand correctly she has not had radiation treatment or chemotherapy of any kind yet. I'm saddened they haven't connected you with a Neuro-Oncologist yet... sorry, but that alone makes me question her neurosurgeon. Second, what is the pathology report showing from her first tumor? Is it Anaplastic (Grade 3?) I can only assume it is since it has recurred so quickly. Have they tested for the BRAF V600e mutation? Many PXA's are showing it to be positive for this mutation and there have been a few reports of using targeted mutation therapy with BRAF inhibitors that are shrinking the tumors (Tafinlar & Mekinist drug combination or Veberafinib alone.) I have a lot more info on these if you need and have recently been on them. The BRAF mutation has been found in melanoma, lung and colon cancers and these drugs have been FDA approved for Melanoma so far. Unfortunately, since PXA is so rare my insurance company would not approve the drugs for me, even with an appeal...but luckily the pharmaceutical supplier Novartis granted me a one year supply of the drugs thru the Novartis patient assistance Foundation. If your daughter goes the drug route her MD needs to get applications started ASAP. My insurance process (application, denial & appeal) took well over a quite agonizing month! If she doesn't do surgery she may want to consider a biopsy to see if her pathology has changed since her surgery 4 months ago. I can't emphasize enough that she needs to be seen sooner than later by a well qualified Neuro-oncologist to get the best treatment advice going forward. It may mean getting on a plane..but trust me, it will be worth it. Mayo has an easy referral request process. My Neuro-oncologist sees patients both in Rochester, MN and the Mayo campus in Jacksonville, FL. I hope this helps and can continue the conversation. I'm sure you have lots of questions and I'm happy to answer.
With HOPE all things are possible, Audra

Hi 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!

Hi 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!

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.