Bryce
Dr. Jabbour Appointment
We met with Dr. Jabbour on Tuesday, and he walked in fired up – ranting about insurance and how they’re bastards.
Why are they bastards, you ask?
Because my insurance won’t pay for CAR-T at MD Anderson – only at the Mayo Clinic.
To work around this, Dr. Jabbour enrolled me in a CAR-T trial where the pharmaceutical company covers the cost of manufacturing and delivering the CAR-T cells (a mere $500K). But here’s the catch: the hospital stay, labs, monitoring, and everything else is still billed to insurance. And guess what? My insurance won’t cover that either – even though they’re saving half a million bucks on the CAR-T itself.
To try and push it through, Jabbour said not to panic if I see follow-up notes that make it sound like I’m in critical condition. He’s deliberately emphasizing my “too sick to travel” status in hopes of convincing insurance to allow me to stay at MD Anderson for treatment.
I imagine it must be incredibly frustrating to think you can cure a patient only to have insurance block the treatment because it’s not yet the standard of care.
What I Am Freaking Out About
Let’s talk about what is freaking me out. A couple posts ago, I mentioned learning that I’m the proud owner of a particularly nasty mutation – one that historically comes with a poor prognosis. That news hit hard, and I’ve been moderately depressed since.
So, after our talk about insurance, I brought up the mutation. Jabbour shrugged it off.
“I already proved you can clear that with Inotuzumab and Blinatumomab. Not a big deal.”
I just sat there, kind of stunned. He even recommended a couple of studies – that he authored – if I wanted more reassurance.
Huge relief.
I’ve been carrying that fear around like an anchor, and in one sentence, he gave me permission to hope.
Avoiding Transplant
Per Jabbour, if I’m MRD-negative (per next-gen sequencing — aka the million-cell test) and my T-cells “expand to 5” after CAR-T, then no transplant needed.
Patients whose T-cells expand beyond 5 post-CAR-T have better survival outcomes than those who go to transplant in the short-term. The downside? This data is still relatively new, and long-term durability isn’t fully known, but modeling suggests it’s promising.
Also, I have zero idea what “expand past 5” means. I’ll cross that bridge when I get there.
Last Bit of Good News
This week has been full of good news, super mutation – no problemo, and my spinal fluid/brain is clear of any leukemia. I’ll continue to have lumbar punctures with chemo to prevent spread but it’s clear. I don’t think I could handle a super mutation and brain leukemia.
Other good news – my labs were so good yesterday that they canceled my labs on Monday. They’ll check again on Tuesday before they disconnect me from the blina pump. Assuming they look good then I’m gonna head back to NWA for a few days to see the family.
The Running Tally
- Red blood cells consumed: 1
- Red blood cells donated (on my behalf): 17 +16 from the last update thanks to the folks at Sam’s Club (+15) and Larry Box (+1, I’m taking credit for it)
- Platelets consumed: 1
- Platelets donated: 0
I donated blood today and wanted to provide a Walmart follow up. Here in FL, the big dog grocery is Publix and that is primarily where the OneBlood mobile buses are. That is where my blood mobile from OneBlood was this morning. I got there and went through the processing and just before they stuck me, a Publix manager came in the bus door and told OneBlood that they had to leave and couldn’t be in their parking lot. Good work Publix. OneBlood moved the bus up the highway a bit to a super Walmart and all was good. It shows you who the more caring corporate citizen is in this area.
Bryce, I am not sure what continues to impress me more: your strength/courage or your writing skills! Incredible….. sending much love and Prayers! Jennifer & Roger
Bryce, I am not sure what continues to impress me more: your strength/courage or your writing skills! Incredible….. sending much love and Prayers! Jennifer & Roger
I dream of the day insurance companies are no longer needed. But it’s great to see good news coming your way. Wishing you all the best, man. And have some Slims Chicken for me in NWA 🙂
This Jabbour guy is really living up to the hero status you built him up to be. Would really love it if health insurance companies could be the villain less. It’s awful you are having to deal with that instead of just focusing on doing everything you can to get better.
We are missing you up here at the lake, but it’s also total chaos so I’m glad you’re someplace quieter. Thanks for the update and the good news!
I am scheduled for my 2nd blood donation next month. This was my first time donating as well. Wish I would have started donating a long time ago. ❤️
Let’s gooooooooooo!!!!!!!!! This is encouraging. I continue to rosterbate over your medical team and I know this news is a relief for you. Sending you love! ❤️
I know my credentials aren’t quite as impressive as this Dr Jabbour, but I always give you permission to hope. 🤍🤍
Love these updates, Bryce. Crossing my fingers your labs went well yesterday!
Thanks for the update, Bryce. I know well that insurance companies can be absolute garbage and I hate that you have to deal with their BS on top of everything else, but it sounds like Dr. Jabbour has a solid grasp on how to work around their wonky policies. And that’s great news that the mutation isn’t any kind of game-changer to him when it comes to your treatment!
We’ve all been missing you here at the lake and we’re keeping you here in spirit. I hope you and MB and the Big Al all have a wonderful and peaceful time together back in NWA this weekend.
(PS- I’m able to donate double reds again in September and will definitely be doing so in your honor!)
While I hate that you would have to go to Mayo for CAR-T, or any transplant for that matter, Walmart’s partnership program with them is undeniably the best healthcare coverage for cancer patients I’ve ever seen. One of my patients with Walmart insurance had to go to Mayo for transplant instead of using UAMS, and she is doing amazing! I believe Walmart’s COE program covered all transplant-related expenses at 100%, no cost to her.
Continued thoughts and prayers for you on this second journey. Keep fighting and kicking ALL’s rear!