Thursday, November 07, 2013

Stage IV is No Time to be Timid

I've been rather giddy about my ROS1 mutation news. When I met with my oncologist on Tuesday, she told me that I am the first person at the University of Michigan Cancer Center EVER to test positive for ROS1. She said the technician ran out into the hall screaming when he got the results. The tumor board couldn't stop talking about it. "We finally got a ROS1!"

How cool, I'm Patient #1.

My oncologist wrote my prescription for Xalkori (the brand name for crizotinib), then paused as she handed it to me:
We may run into some problems, because this is considered off-label for ROS1.
Urg, I didn't even think of that. Because the ROS1 group is so small (only about 30 cases), there have been no clinical trials specifically for us. We have tagged along with the ALK mutation trials because, thankfully, the mutations are similar enough that their targeted drugs also work for us. But technically, there are no drugs approved specifically for ROS1. My oncologist assured me that if insurance turns me down, we can appeal directly to Pfizer to get compassionate use of their drug. But all of this will take time.

I asked if I should wait to start the meds until after my scheduled scan on Friday.
Oh, this won't be through insurance by Friday.
Sure enough, when I took the prescription to the Cancer Center pharmacy, they tried to run it and it was declined by my insurance. They will need to get a "prior authorization." This will take several days.


I spend Wednesday hoping to get a phone call from the pharmacy. No luck. So, I go to Pfizer's website and fill out the forms to request the drugs, but notice that the processing time is two weeks. Urg.

I contact the wonderful Bonnie of the Bonnie J. Addario Lung Cancer Foundation. She replies within minutes, and starts working on my behalf. She contacts Dr. Camidge, one of the leading ROS1 researchers, and he advises her what documentation I will need in order to dispute my insurance. (Here is a nice short video of Dr. Camidge discussing ROS1, crizotinib, and the FDA challenges.)

Thursday rolls around, still no word from the pharmacy. I start to get nervous. I would normally be starting chemo on Tuesday, and if we end up needing to go to Pfizer and then wait two weeks for a response . . . this could drag on for ages without me getting any treatment.

So I tweet my frustration.
Tori Tomalia ‏@lil_lytnin
Fighting @BCBSM to get my meds. #ROS1 #xalkori #LCAM2013 #lcsm
Moments later, this appears in my feed:
@lil_lytnin Please email the 800# on the back of your card & contact info to for help getting answers. Thanks. ^GD
Wow, they follow twitter? Incidentally, does anyone know what "^GD" means?

I consider contacting member support, though doubt that they will be able to help me. I decide to first call the Cancer Center pharmacy to see if any progress has been made on my claim. Nope, insurance is refusing it, needs a "prior authorization." The pharmacist said they will work on it and let me know as soon as they know more.

How frustrating that my potentially life-altering medication is being held back by a mess of red tape.

I try to put the girls down for a nap (mostly a failure), I attempt to get some work done (semi-successful), I eat some lunch (success!), and then the phone rings.

It is BCBS of Michigan. They have expedited my claim and approved me for a 6 month supply of Xalkori. They tell me to call my pharmacy and have them re-run the prescription. It will go through now.


I call the pharmacist and tell him this.
(Stunned silence) Your insurance called YOU?!? This happens in maybe ... 1 out of 20 cases.
He re-runs the prescription. It goes through. The meds are ready for me.

I tweet a "thank you" about BCBS expediting my claim.

Then I start to feel bad. Had I strong-armed the insurance company by tweeting about them? Had I been inappropriate in airing my frustrations publicly? Should I have just quietly waited and accepted whatever response they gave? Suddenly, the words of a fellow lung cancer warrior ring in my ears: "Stage IV is no time to be timid."

It's true, I am literally fighting for my life.

Tomorrow morning I have a CT scan to see the impact of rounds five and six of chemo (results on Tuesday). I would love to see more shrinkage, and hope for at least stability. I plan to ask for a vanilla/mocha blend for the contrast solution (see my post "Fear" for that story).

Tomorrow night I will start my new adventure with Xalkori. I hope I am one of the lucky ones who show a great response. I plan to stock up on ginger ale and Imodium for what I've heard can be a rough start with this medicine.

I will gladly accept all thoughts, prayers, well-wishes, chanting, etc as I head down this new path. Thank you, as always, for the amazing love and support you have been sending from all over the world. 


WanderingJ said...

I think GD Good Day
But in this case- perhaps it should stand for Great Day or even Greatest Day.

Anne said...

You are in thoughts and meditations here Tori! Way to go!

Two2Love said...

Social media has totally changed the way companies operate. Most have full time marketing people specifically dedicated to posting on their feeds and monitoring customer feedback. You ABSOLUTELY did the right thing. Don't feel bad about it. I'm glad you called them out and that they responded so quickly!

Two2Love said...

This is Jennifer Nordstrom, BTW ;-)

Sarah Milstein said...

The little carat followed by letters usually signifies the initials of the person who wrote the tweet. BCBS probably has more than one person staffing the account, and so they sign their posts. Also, yours was a totally appropriate use of Twtter. :)

Amazed and thrilled by your latest updates. Sending love.

kimmywink said...

Wonderful news!

Lil-Lytnin said...

Thank you, Decky!

Lil-Lytnin said...

Thank you, Anne!

Lil-Lytnin said...

Thanks, I'm glad to hear I was not out of line.

Lil-Lytnin said...

Ah, I get it. Thanks for the explanation. Fingers crossed that the meds work!

Lil-Lytnin said...

Yay! I'm joining you in the Xalkori club!

Unknown said...

Wow! You go girl!!!

Anna Brogan Knight said...

The power of reaching out! Hopefully it brings great results. People really do care!

The Denjas said...

Three cheers for successful use of social media. Well done! I'm following your blog and praying for you Tori. God speed.

WendyB said...

Hi Tori, just got your blog info from Ms. Marion. Keeping you and your family in my prayers. Please tell Zander Ms. Wendy says "hello" and I hope he is enjoying kindergarten. Oh, and congrats on the win with BCBSM!

Lil-Lytnin said...

Hi Wendy! Zander is having a great time in kindergarten. He still asks about you and Miss Marion. I hope you are having a good school year.

Janet Freeman-Daily said...

Glad you're getting the drug you need!

Yes, BCBS follows Twitter. When I blogged about a rude denial letter I received from them and the blog hit Twitter, they called me two days later to say they reversed their denial. No one else at my hospital has gotten this procedure approved by BCBS except me.

Tiff said...

^GD is usually how a group-run twitter notes who the sent which tweet. The tweet to you was from someone with initials ^GD. I've seen it a lot with airlines on twitter.