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!

@JustinMcClanahan
Danica is doing ok. She has started her oral chemo tafinlar and goes for MRI sept 20th! Praying this tumor is shrinking

@daniellemarie,

Thank you for updating us on Danica. We are glad to hear she is doing OK with her oral chemo treatment, that is a good news. She is doing well with side effects so far?

@JustinMcClanahan
She has been nauseated every morning! Sore joints and tired. She had hand foot syndrome on bottom off feet but that has seem to go away!

Hello, my name is Carolyn, at the age of 16 my son John was diagnosed with PXA grade3, in 2014. The surgeon remove the tumor and he had radiation treatments. John`s MRI show no signs of the tumor until October 2017. His doctor wants to try a combination of 2 different types of chemo in pill form, they are Mekinist and Tafinlar, waiting on insurance to approve. I hope all goes well for your daughter, will keep here in my prayers.

Hello @csaylor, welcome to connect. I'm sorry to hear that your sons struggle with PXA is going to need chemo again. Has he experienced any symptoms? or was it a routine check up that showed signs again?
I would like to introduce you to @audrapopp who talks about Mekinist and Tafinlar here in this post- https://connect.mayoclinic.org/discussion/pxa-help/?pg=1#comment-63994. How long does it usually take for insurance to approve something like that?

I'm sending you some super power mom strength. Please keep us updated on how he is doing.

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.

I wanted to share my lengthy, over 2 month, insurance process I endured for the drugs Tafinlar & Mekinist before ultimately receiving the medication through the Novartis Patient Assistance Foundation in January of 2017. Novartis is the maker of the drugs. My Anaplastic PXA Brain Tumor harbors the BRAF V600e mutation that these drugs target however they are still not yet FDA approved for brain cancer but they are for Melanoma with the same mutation, so it is very likely most insurance companies will try to deny these targeted drugs for brain cancer treatment as the cost is about $23K per month in the United States.
I wish I would have known what the process of approval of these meds looked like when the decision was made to start them for treatment.
1. My Neuro Oncologist placed the priority order with our private insurance BC/BS and they had 72 hours (business hours) to respond and denied the order because they are not FDA approved for my diagnosis
2. Appealed to insurance company and they had another 30 days before needing to make a final decision. My physician sent in a written statement along with my medical records and any other supporting evidence-other case reports, clinical trial results, etc. and again was denied.
3. Next process with insurance company was to have an independent case review by another physician, (selected by the insurance company.) my Neuro Oncologist again submitted everything from step 2 along with a personal call to plead my case as I’ve exhausted other chemotherapy options. Again it was unfortunately denied.
4. With denial process steps of private insurance company complete, the Novartis Patient Assistance Foundation application was fairly simple, needing patient financial information and physician statements than approved quite quickly..It took about a week and was approved for 1 year of the medication at no cost and delivered directly to my home. If needing for longer duration will need to resubmit application.

I’m hoping as more proof of benefit of these targeted drugs is available that insurance companies will approve, but very grateful for the Novartis Patient Assistance Foundation to come through in desperate situations to continue to help patients like myself. Undue waiting for the answer on needed medications to properly continue treatment plan course is tremendously hard because it is so out of our control as patients & caregivers. I definitely kept calling throughout the process for updates...but still so discouraged at the system. The brain tumor and treatment sometimes seems much easier than all the unexpected hoops we often must jump through. Hoping this helps shed light, my advice is when It is definitively known you will need these medications, work with your oncologist office to get all the necessary paperwork in everywhere timely and keep a log/timetable of the process, who you talked to, what was said, what’s needed, etc. Good Luck @csaylor