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← Return to Pleomorphic xanthoastrocytoma tumor (Pxa): help
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Pleomorphic xanthoastrocytoma tumor (Pxa): help
Brain Tumor | Last Active: Dec 9, 2023 | Replies (132)Comment receiving replies
I have had 6 surgeries and feel very lucky to have had that option. The most recent was March 31, 2017 and completely cleared all traces of recurrent tumor, scar tissue from previous surgery and radiation necrosis. The original plan was to resume the BRAF inhibitor drugs Tafinlar and Mekinist combination after surgery (in clinical trials these drugs are literally shrinking the tumors), but I'm currently not on any treatment as my Neuro-oncologist Dr. Buckner says there is literally "nothing to treat" and I've previously had my maximum radiation treatment. I just had an MRI Monday and excited to say everything remains clear! I will have another MRI in 3 months, and have had previous MRI's scheduled anywhere from 1-6 months all dependent upon current treatment, symptoms or tumor recurrence. For example, after this last surgery my MRI's were day after surgery, one month postop, than 2 months, now as everything looks stable will have my next in 3 months.
PXA's typically return in the same area of the brain, most tend to be near the outer edge of the brain in the parietal/temporal area. It is actually very rare for the PXA to be found in the cerebral spinal fluid, which could than place it in the spine. There are only 2 known reported cases worldwide and I actually have personally met one of them as she is being treated at Mayo in Rochester, MN too and we have the same Radiation-Oncologist Dr. Nadia Laack.
I hope all this helps.
I'm certain your Neuro-oncologist will address the acoustic neuroma as well. I hope you walk away from your July 19th appointment with all questions answered and a plan you all feel good about.
Replies to "I have had 6 surgeries and feel very lucky to have had that option. The most..."
Hello @Imp1 I am Scott and my wife had brain cancer, though a different type, for 14 years that we knew of. Probably more. She, too, had surgery so I speak from my experiences with her and not as a medical professional at all.
The one thing we learned is brain cancer is highly individualized. My wife was left handed and that made a huge difference in the impacts from the location of the tumor, which would not have been evident in a right handed person.
She, too, in the early years looked quite 'normal' and her changes were most highly evident to our children and me and not so much to others who saw her more infrequently and/or for shorter periods of time.
She did have personality and emotional changes after her surgery and her neuro-oncologist told us the brain, after an injury/surgery can cause existing emotions and personality traits to become more pronounced in the patient. This was true in the case of my wife.
Also in her case as the brain tried to 'rewire' itself and make new neuronal pathways she would use much more energy for normal activity than before.
Again, please know we realize brain cancer is unique in each person and they may have completely different effects and affects from the tumor and surgery.
So much is known about the brain, but when a brain is 'broken' it is evident the doctors know much less.
Waiting is tough stuff so I send peace and strength!
@audrapopp my daughter is 8 years old been diagnosed with pxa. She under went surgery march 25th to remove tumor. They had left Lil pieces which were under blood vessels to dangerous to touch. She then started radiation 6 weeks later and by the time radiation started to do it job her tumor grew. We recently were air lifted back to Oakland children's hospital due to seizures and that's when they did MRI and found it growing. She is now on tafinlar oral chemo and seizure meds kepra. We don't go back for MRI till sept 20th! Praying this chemo is shrinking her tumor
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Thank you Audra.. so glad everything is clear and I hope you are doing well.
We are getting closer to our next appointment and anxious as you can imagine.
My daughter wanted me to ask you about after surgery and how you felt emotionally. She feels like she has less patience now and has mood swings and she is wondering if that could be effects from brain surgery. Of course I tell her a lot that "Hey, you had brain surgery so that is a big deal!" She says people's reactions such as, "You Look fine." etc... bothers her sometimes. i guess some people expect a bald head and a sick look when they hear of someone with brain cancer. I personally can see the changes in her but to someone from the outside I'm sure she looks fine. This is stuff we will talk to the oncologist about but she wanted to hear from you your thoughts and how it's affected you. Thanks