Sunday, June 9, 2013

Wondering if This is a Miracle?

I have really never thought about myself in the context of miracles, but my story below sort of feels like one to me.  It started about four months ago and I haven't blogged about it yet because it's a long, complicated story and I'm not sure I've completely processed it. 

Pan-cancer genetic testing is done on tumor cells looking for any and all DNA mutations known to cause cancer.  This testing will also tell which chemotherapeutic agents will work to inhibit cancer cell growth and which chemo agents won't help.  Early on, I declined pan-cancer testing because I didn't want to know if I had a type of cancer that wouldn't respond to any known chemotherapies.  However, after getting the bad news that my first chemo drugs weren't working, I decided it was time for me to have the test. 

So in mid-February I had a second liver biopsy. My oncologist suggested that we send out samples to two labs.  The first lab, Lab-A, could get us results on two lung tumor mutations, ROS1 and cMet, in 7-10 days.  If I had either of these mutations, I could start an oral chemotherapy ASAP.  The second lab, Lab-B, would do the pan-cancer testing, which would include ROS1 and cMet, but the entire testing result (for ~280 mutations) would take about four weeks.  

I was all for sending a sample to Lab-B to get information about all DNA mutations known to cause cancer, but was hesitant to send a sample to Lab-A.  The chances of me having ROS1 or cMet were ~1%, the test costs $thousands$ and I wasn't sure my insurance company would cover the cost of two lab tests that tested for the same thing.  After long discussions with Wynn, he talked me into sending samples to both labs.  

You know my good news that I have ROS1.  [BTW, I also have cMet.]  Immediately after receiving the results from Lab-A, the wheels were set in motion for me to get insurance approval for an oral chemotherapy called Xalkori.  It took over a week to actually get the medication, but I started it as soon as I could.  

Then, the results from Lab-B came back and here's where my story gets wonky:

Although Lab-B said that I have cMet, they did NOT find that I have ROS1.  I happened to have an appointment with my oncologist the day the results came in and immediately panicked when he told me about the discordant results.  My head swirled with thoughts.  Shit...we were treating the wrong thing with a drug that costs $14,000/month and I was going through hell managing the side effects. My oncologist reminded me that there were studies showing that cMet also appears to respond to Xalkori and that I should continue taking it while he tried to sort things out.  He had already called the directors of Lab-A and B and was waiting for calls back.  

In the mean time, I went back and read the lab report from Lab-A and committed myself to reading every word on the report from Lab-B as well. (Pan-cancer testing lab results are >30 pages long.)  Lab-A called my result positive for ROS1 because they found 27% of the cells tested to be consistent with a ROS1 mutation, (anything over 20% is considered abnormal.)  Lab-B called my result negative for ROS1 because they found 0% of cells to be abnormal.  However, in reading every-single-word on the Lab-B report, I noticed, in small print, that my ROS1 testing was sent out to a secondary lab and conducted at Lab-C.  I called my oncologist, who immediately called the director of Lab-C.  The director at Lab-C re-ran my ROS1 test and in April issued an "Amended Report" saying that I was found to be positive for ROS1, with 85% of my cells tested being consistent with a ROS1 mutation.  Hmmmm 0% to could that happen?

So here's the miracle part:

If I had never had a liver sample sent to Lab-A for the quick turn-around-time for ROS1 and cMet, I would have never known that I actually have ROS1 and cMet.  Consequently, I would never had started on Xalkori.  I'd still be on a traditional IV chemotherapy and probably not doing well...certainly not well enough to be back in the gym.

Thanks to my oncologist for wanting to send the sample to Lab-A and to Wynn, who convinced me that I should "just do it."

I got this shirt from my dear friend, Claudia.  (Thanks, Claudia!) Much more than being Wonder Woman, I find myself to be a Wondering Woman.  Under the cap, my hair is slowly growing back.  It's still too short for me to feel comfortable to go without a wig or cap. 


Anonymous said...

Wow, Luna. Kudos to not only your oncologist as well as Wynn, but also to your continued perseverance and uber brainpower!

Dana Shields said...

YAY YAY YAY YAY!!! Wonder Woman is indeed wonderous. ;-)

denise Friesen said...

Way to go wonder woman!
love you,

Shirley Kroot said...

It was good to see you last month. I just got back from 2 weeks in Quebec and read your last 2 blogs. We are sooooo glad that things seem to be working better. You are truly a Wonder Woman, but I have always known that. Love and hugs, Shirley

Ann said...

Wonder woman, maybe, but wonderful woman, most definitely!

Toni Bac said...

Amazing!!! Wonder Woman indeed- my "new" " old" friend