Pleomorphic xanthoastrocytoma tumor (Pxa): help

Thank you for asking @colleenyoung
My daughter has just finished radiation and chemo. She will have MRI in January and start chemo again. The biggest development is her tumor they took out in September is now a Glioblastoma grade IV. So we are very worried about this. She is very sick still from chemo and hasn’t ate in over a month. She is trying to use this break from chemo to enjoy Christmas with her children.

I can imagine you're all worried about these developments. How frightening for you as a mom and for her as a mom. You and your daughter might appreciate the tips in this blog from the Mayo Clinic Cancer Education Center that @meganroessler wrote:
- I Don't Want to Talk About my Cancer During the Holidays https://connect.mayoclinic.org/newsfeed-post/i-dont-want-to-talk-about-my-cancer-during-the-holidays/

Will you be with your daughter and grandkids from the holidays, too?

@colleenyoung hello Danica is just getting over flu and strep throat so her mri this week is rescheduled for next weds and results next Friday

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

Great information, Audra. You’re always a wonderful resource. Thanks for sharing your knowledge and experience. C.

Am I allowed to post my email here?

I haven’t been on in a long time. Wanted to check see how everyone is doing? @daniellemarie how is your daughter?
Update on my daughter: her tumor is growing back for the 3rd time. The Temador and Radiation didn’t stop it. So now she is starting a clinical trial. She is doing well. Because she had a hole in her brain from her other 2 surgeries the tumor has empty space to grow in to. Her symptoms hasn’t started like before yet. All our hope is in in this clinical trial. We pray this will stop the tumor growing. It’s a combination of Avastin and another trial drug, if she gets the trial drug. They pick who gets at random by a computer. It isn’t a blind study so once she starts we will know if she gets both drugs. The Avastin could stop growth. Sure wish there was more paths to take to stop this cancer. It is evil.