Go Duke!!

Go Duke!

Well, yesterday we received the very best news we could have hoped! The oncologist from the insurance company reviewed my Dad’s case and “emphatically agreed” with our approach to treatment! I should say a couple of thank yous to the people who worked tirelessly to make this happen and help us out! Heidi from the Welfare and Pension office, you are amazing! Thank you for taking up this cause with me from out of the blue! You remembered who I was from when my Dad was first diagnosed which was astounding, and your compassion and empathy is unbelievable! Phillis, the wonderful patient service representative at Duke who initiated the approval process. Your dedication to following up with the insurance company, and for calling me on your day off to share the great news was inspiring, thank you for celebrating with me! Craig and Jeff, thank you for your legal consultation early on Saturday, your conviction and advice helped me have the courage to tell Dad we would fight it no matter what! It is part of why he stayed for treatment, so thank you! And finally, thank you to the Oncologist who understood why we were taking this clinical trial and for approving my Dad’s treatment. I don’t know your name, but we are blessed that you agreed, so thank you!

So Dad was admitted this morning at Duke and is preparing for surgery tomorrow. After receiving the good news, Mom and Dad had time to crash a wedding and enjoy a beer at “our” little picnic table on the lawn. He is a little busy today (as to be expected) so I will fill you in on what our new treatment plan entails and maybe a couple of tips from our recent experience. I should preface this with the fact that this is what we have decided is the best option for us and my Dad at this time, all the information I provide is from what I understand, but anyone looking at this should do their own research as well!

D2C7-IT – sounds like something out of Star Wars, huh? Well it kind of feels that way too! This is a brand new Clinical Trial that Duke is conducting. D2C7 is an immunotoxin that they will inject into my Dad’s brain starting on Tuesday. The process of approval was long, I first contacted Duke on August 10th, but it was worth it. The clinical team down at Duke are downright the most hopeful, sweet, caring southerners I have ever met (I haven’t met that many, but trust me, these people are good)! Chevelle, one of the wonderful clinical trial RN’s, explained to us that D2C7 is an immunotoxin that they have been testing in rats (yep, rats!) and had shown promise in early studies of breaking down glioblastoma tumors. I am not of clinical background, so can’t go in to specifics but will include the link to the clinical description of the trial at the end of the blog. According to the clinical trial documentation the D2C7 immunotoxin has a “high binding affinity for both EGFRwt- and EGFRvIII-expressing glioblastoma multiforme (GBM) cells.” I think this basically means it is attracted the mutating cells in the B (bastard as I now refer to it) and kills the bad cells. What I understand is that a few weeks after infusion, your immune system responds to the toxin, and fights it like it would any infection. She said in early studies it kind of looked like “Pac-Man” was going in and punching holes in the tumor! I love Pac-Man!!

There are risks with this that are similar to any other treatment of brain cancer, one of the biggest being brain swelling and deficits from the swelling post initial treatment (again with the short term memory loss, headaches, all the “lovely” side effects associated with this nasty tumor.) And, a big risk knowing that this hasn’t been done on very many humans (But Dad always says, Go Big or Go Home, so why not?) Also, there are risks associated with the treatment itself… biopsy tomorrow to make sure the B is still what we think he is, the placement of up to 4 catheters in his head where our B resides. Then if all goes well, a slow infusion of the immunotoxin for 72 hours (Yes, 72 hours). A short break and CT scan at hour 24 to make sure the drug is going where it needs to then back at the infusion. And hopefully, if all goes as planned Dad will be discharged on Saturday and make the flight home to us on Monday.

If it all sounds a little crazy, don’t worry we think it is too! But we are in rally mode (Chris, I expect a rally hat picture with a Duke shirt on at some point this week!) and we are fighting! Why? Not just for more time, but also because this could help other people struggling, it could be a breakthrough and we have hope that this new experimental treatment might just knock out this dragon’s fire breathing ways. Hope.

After this week, Dad and a caregiver will need to fly back to lovely North Carolina around 9 times for MRI’s and appointments over the next 12 months. (NC is literally across the whole country from us if you didn’t know! We keep getting aghast responses with southern drawl “Oh My! Seattle, that is so far! You guys live way, way up there and came all the way down here? Well… hon, we are happy to have you!” from nearly everyone we talk to! Gotta love the southern charm!) Thankfully we have reached our out of pocket maximum and the expense of the routine clinical costs are covered by insurance. But there is additional expense in flights and lodging accommodations that we will need to resource. The Duke clinical team gave us a pamphlet of resources for flights and lodging, and they actually were able to provide us free tickets from Southwest so Mom and Dad could make this initial trip (Amazing). And, I know we will figure all this out with time, we continue to march forward!

So in effort to help others who may be suffering through and fighting their own dragon, some tips from our experience. A little bit about medical records and HIPAA… If you decide to pursue a clinical at an external facility they will likely want all medical records and history for your loved one. Your current health care facility won’t send this without having your loved one or a power of attorney sign a “Medical Records Release of Information”. Sounds official and complicated, but really it’s just a piece of paper you need to sign saying its ok to share the medical records. Call the Medical Records department, request the form, sign it and send it back via fax (so old school, but this is the current state of healthcare unfortunately) or e-mail. Depending on urgency of your situation, you can request that the medical records department Fed ex or overnight the records to your facility of choice, just be prepared with the address. This shouldn’t cost you anything (or it didn’t for us at least), and was the only way we got my Dad’s records to Duke so quickly. We asked for everything, but Duke had a very clear list of what to request, which was a great help. We completed forms and paperwork and had it back to Duke within 24 hours, which greatly advanced how quickly we were able to be seen.

Just a quick note on insurance denial, as this came as a complete shock to us this week, as the rest of his care at Duke has been covered thus far. There is a provision in the Affordable Care Act that states insurance cannot deny coverage of routine clinical care costs associated with clinical trials (Provision 2709). The clinical trial should cover any costs associated with the trial (Like the drug and materials to administer the drug). The ACA requirement went into effect January 1, 2014, but does not indicate to providers, health plans or insurance companies how to implement this within their own organizations. So, if you find yourself in a situation similar to ours where insurance was denying a clinical trial due to it being an investigational study, appeal the denial. Do not be afraid to advocate for you or your loved one. A friend gave me the advice that if I weren’t advocating for my Dad, then who would?  Insurance is a business at the end of the day, and that is how I treated it when fighting for my Dad on Friday. Be an advocate, be vocal and don’t give up when it all seems overwhelming and unreal. Then take a breath, and have faith. It doesn’t always work out, but in our case it did and we couldn’t be more blessed.

Again, these are all my own humble thoughts and opinions, I am no expert but have learned so much through this crazy battle. Oh wait…. I forgot one person to thank! Dad, you are an amazing, strong fighter. I know this battle has been hard, and at times you feel weary emotionally and physically, but we are so blessed to have you in our lives, and in our babies’ lives. You are an inspiration as a Father, Poppa, Friend and human being. Thank you for fighting! So, I sit here at the other end of the country (way up here!) thinking a few things:

1. Go Hawks (Kick off in 2 hours, I know you will be watching)

2. Go Duke Rock Stars (Kick off to surgery in less than 24 hours, (As Craig would say, Film at 11:00))

3. Fire up Big Team (We are all with you Dad, no matter how far away we are right now!)

If you are fighting a dragon (any dragon like this or something else difficult) I hope our experience helps in some way. Hug your loved ones, kiss your babies, make memories and cherish one another. I am humbled by the compassion and generosity of others, allow yourself a moment to do the same.

D2C7-IT: https://clinicaltrials.gov/ct2/show/NCT02303678