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Mar 28, 2018 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

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

Jul 6, 2017 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

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.

Jun 29, 2017 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

I understand your concerns but am so glad to hear she will be seen fairly soon. Waiting is extremely hard, knowing a plan always feels better for myself… it must be very hard as a parent of a young adult in this situation, but you do need to let her have some control and make the major decisions, and if she’s ok with waiting, it’s okay! It really sounds like they are getting her where she needs to be now. Nice your daughter has a strong advocate and support person on her side. I saw your FB messenger post but it has disappeared, feel free to try again. Prayers for you and your family as well. I was diagnosed at age 33, but they felt my tumor likely started growing when I had my first grand mal seizure at age 29- I am now 50! PXA’s typically present with seizure activity. There are finally many advances, clinical trials and new treatment options being developed in the area of brain tumors, so keep the Hope! The past 2 years in May I have gone to Washington DC to advocate with the National Brain Tumor Society (NBTS) sharing my story and fight for increased funding for brain tumor research, the cancer moonshot initiative and reduction of drug costs. The NBTS is a good contact/website to search for information and they have recently developed a clinical trial finder for brain tumors on their site which your Neuro-oncologist will likely be aware of especially since they are at a research center. Another suggestion, she may want to inquire about meeting with a social worker either locally or with her Neuro-oncology appt. to see if there are any resources for her financially and to maybe start application for social security disability if she qualifies (Anaplastic PXA diagnosis falls under compassionate use and quicker approval.) Attending a brain tumor support group in your area is another great idea, calling the American Cancer Society 800# (they may have other resources available too) and I believe support groups are also listed on the American Brain Tumor Association(ABTA) website by state. Keep making connections and enjoy your time with those grandchildren!

Jun 28, 2017 · Pleomorphic xanthoastrocytoma tumor (Pxa): help in Brain Tumor

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

Apr 25, 2017 · #MayoClinicNeuroChat on Innovations in Neurosurgery in Brain & Nervous System

It did not appear on FB live either.

Apr 25, 2017 · #MayoClinicNeuroChat on Innovations in Neurosurgery in Brain & Nervous System

I’ve been trying to view without success as well!

Mar 29, 2016 · Has anyone been diagnosed with a pilocytic astrocytoma as an adult? in Brain Tumor

My brain tumor, although not the same, is equally rare and I’m told by my neuro-oncologist there they see 3-4 new cases of my tumor type yearly. I can assure you that Mayo has most likely treated others with this tumor type and glad you are considering a second opinion there. Good Luck!!

Mar 24, 2016 · "Electric Shock" type pain in my scalp! in Chronic Pain

This sounds like You are having Ice Pick Headaches…so named because it feels like someone is poking your head with an ice pick. I feel your pain!! I was plaqued with these for many years. Treated initially with neurontin by my Neurologist but it didn’t seem to help, even with increasing the dose the stabbing pains continued. I was than referred to a Mayo Clinic Neurologist, Dr Julie Hammack..took me off the Neurontin and tried indomethacin which worked but dropped my blood pressure too low and finally settled on Verapamil which also worked well. I was told they may just go away as quickly as they came on…and was instructed that after no episodes in a 6 month timeframe I could try weaning off the medication and I did successfully!! It really is a weird phenomenon….good luck and I hope this helps!