Pleomorphic xanthoastrocytoma tumor (Pxa): help

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

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!

We had our appointment with the oncologist and I know I haven't posted in awhile but I'm having a really hard time with this. I find myself breaking down at the least little things. A commercial on tv or a simple sentence makes me cry. If I'm feeling this way how is my daughter feeling??! Anyways....

The oncologist showed us her MRIs and they did not get all the tumor of course and it has increased some in 3 months time. His plan is to send out more pathology and do some extensive test on the genetics of the tumor. This test takes 3 weeks to complete and then she has another MRI and we proceed with chemo and radiation. Of course depending on the pathology report that will decide type of chemo etc...
He never mentioned another surgery. His remarks were "You are so young to be dealing with this!" Not once but several times. YES we know this!
So now we wait until her next appointment and we are trying to be positive but we are so scared!
Just the words Chemo and radiation are so scary.
She tells me I have to stay busy and I can't think too much about this and I know! I feel the same way! For now she is preparing for her 4 year old to go to school in a couple of weeks and spending as much time as she can with her babies.
Her 26th birthday is in a couple weeks. I wish I could take this from her and make it go away!! I hate cancer so much! Prayers appreciated.

Hello @imp1 Sorry to hear of your newest challenges for your daughter and you. I am Scott and with my wife's care I remember well that the times of waiting were some of the most difficult. In our medical care we have become so accustomed to having immediate responses, decisions, etc. that these times are some of the worst when it does not go that way.

My wife's MRI also showed they did not get all of her tumor, but she also fought the darn thing for over 14 years. Small comfort I am sure. Her oncologist also did not talk about all our options until her full pathology reports were received and he had all the information he could get. Again, the waiting was a very tough time! I'm sad to hear of your daughter's young age. My wife was 49 and it was so hard at that advanced age too.

Also, as a parent or loved one, I agree with you we would do anything to make it go away or wish we could take it away. Especially when the patient is young.

My wife and I had many well meaning folks tell us to manage our emotions in a variety of ways, often 'stay busy and don't think about it'. As I said well meaning but totally impossible! You are dealing with some very tough emotions and you should expect it to be a roller coaster at times. You wouldn't be human if you didn't!

I wish I had a magic wand I'd be sharing it with you for sure!

Peace & Strength

Hello my 8 year old daughter was diagnosed with pxa grade 3! She had it removed with Lil pieces left because it was to dangerous to remove. Then she started radiation by the time radiation starting doing its job her tumor started to grow back. She had a seizure and we were air lifted back to Oakland children's hospital and an MRI was done and that's when we found out it grew back! Now she is on tafinlar oral chemo! I am so scared for her and would love to hear from others that have this rare form of brain tumor! Thank you danielle

Hello @daniellemarie, welcome to Connect and thank you for sharing your concerns with your 8-year-old daughter. I can only imagine how scary this situation must be. If you notice, I merged your discussion with an existing discussion on PXAs and would like you to meet the other members who have also discussed having a daughter with this tumor. If you are replying by email, I suggest clicking on VIEW & REPLY at the bottom of this notification so you can see the whole discussion and hopefully learn from some of the other posts.

@daniellemarie, how is your daughter responding to the chemo treatment?

Hello thank you for writing! She started 5 days ago. Yesterday her bottoms of her feet have been hurting her to walk or touch which could be side effect to chemo. She also has hip pain which sore joints are a side effect as well. We go back to Oakland sept 20th to have MRI of brain and spine! She has a positive attitude but scared! Her question to her oncologist was "will I die" so inside she has her fear like I do.

@daniellemarie I'm so sorry to hear about your daughter. I know how you feel. I'm sure you have read about my daughter. She is 25, turns 26 Wednesday. I have read a lot about PXA and although rare it says it's more common is children. But saying that the cases I have read about so far have been young adults. My thoughts are they may not know as much about these tumors because they are rare, of course I'm not a doctor by no means. I'm just a very worried parent.
It's been 6 months since my daughters surgery and we haven't started any treatment as of yet. It is growing back and they have sent it for more test. They are talking about chemo and radiation now. They are gonna see the results of the pathology and decide on types of treatment. Meaning what kind of chemo etc...
If you don't mind telling me...
How long after surgery untill your daughter started radiation? How long after surgery till they found it growing back?
I have read cases that the tumor waited years to grow back. I think maybe if they manage to get all of the tumor that helps. My daughters tumor was the size of a golf ball on the frontal left side. By the time they found it it had swelled her brain so much that the swelling was intruding into the right side of her brain. It took a few months for the swelling to shrink for them to be able to see if they had gotten all of the tumor. They hadn't sadly and of course it's growing.
I'll be thinking of you and her. Many Prayers!

I am so sorry! The unknown is very scary! I had wrote you a long message but for some reason it would not let me send ugh

@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