Tuesday, December 26, 2017

The Moment We've All Been Waiting For

I got my drugs!

I got my drugs!

I got my drugs!

My first dose of entrectinib

Now let's hope they work.

Thursday, December 21, 2017


Well, my liver counts have been dropping, but they still aren't low enough to start the trial. Because of the holiday weekend, my next possible start day is December 26.

The good news is that the counts have been dropping pretty dramatically, meaning this is almost certainly a reaction to withdrawing from my medicine, rather than something more sinister (liver failure, cancer progression, etc).

I have been eating all sorts of liver-healthy foods (beets, watermelon, walnuts, lemon water), and the trial coordinator said to keep doing whatever I'm doing, because it's working!

I'm really disappointed, and fearful that by December 26 I will have been off of cancer medicine for 18 days. I'm trying not to stress (ha ha ha) and enjoy the fact that for the first time in over 4 years I don't feel nauseated when I wake up. So that's a plus.

That's my story for now. Happy holidays from our family to you and yours.  And if you are looking for me, I'll be the person hanging out guzzling watermelon-beet juice and munching on walnuts.

Monday, December 18, 2017

Here's your medicine - JUST KIDDING!

Well, faithful reader, you may recall that I was supposed to start my clinical trial today. All the tests were run, all the "i"s dotted and "t"s crossed.

I got up bright and early today and had my blood drawn, filled out a bunch of paperwork, met with the trial doctor, and got the run down on all the tests and appointments I will be having as part of the trial. (There are a lot.)

The trial coordinator handed me a bag with a 30 day supply of my new magic medicine, and showed Jason and I to the waiting room. They would call us shortly to head back to the research area where I would take my first dose and then be observed throughout the day.

A few minutes later she came back with a funny look on her face. "I need you to come with me. And I need to take that medicine back." I was dumbfounded. "What?!? Why?"

It turns out my liver values had shot up, beyond the range that is acceptable for the trial.

I was devastated. I had the pills in my hand! It crossed my mind that I could have just made a run for it, see if they could catch me and tackle me to the ground!

So close!
We went to a consult room where we talked it over with the doctor. We will do another blood draw on Wednesday, and Thursday, and again next Tuesday until the counts come down to the acceptable range. I'm speculating that this could be part of the washout process. I've been sore for days, so perhaps my liver is still trying to get it all out of my system.

I'm very anxious that I have been off all cancer medicine for 10 days now, and that I don't know when I will be starting back on treatment.

Merry Christmas, huh?

Thankfully Jason, my human Valium, was by my side during all of this. I think I might have lost it if he hadn't been there. He is pretty remarkable is scary, stressful situations.

So, we went home. We had planned to spend the whole day at the hospital, but now we had the rest of the day free. We decided to make the best of it. I had been completely incapable of thinking past December 18 (I had been telling myself I just had to keep it together until then, even counting down the hours until I could get back on treatment), meaning we hadn't done any Christmas preparations. Our kids would probably appreciate some presents!

What started as an awful day turned into a surprisingly peaceful and pleasant afternoon. I guess Jason and I have a lot of experience dealing with really crappy life-and-death situations! Too much experience, if you ask me.

If you have any more good vibes, wishes, or prayers to spare, could you send them at my liver? I want to get back on treatment as soon as possible.

Wednesday, December 13, 2017

I'm In!!!

The past two weeks have consisted of a brain MRI, chest CT scan, countless tubes of blood drawn, urine test, EKG, extensive health history, bone scan, abdomen and pelvis CT, and an eye exam. After seemingly endless doctor's appointments and tests, I have officially been enrolled in the Entrectinib STARTRK-2 trial! My first dose will be on Monday, December 18. The day will begin with a blood draw, then I take my first dose, and then ... they watch me. I have to stay there and be observed for something like 6 hours. Throughout the day they will do more EKGs and blood draws to make sure I am doing okay. If all goes well, they will send me on my way with a month's worth of pills. This is my first clinical trial, and they certainly appear to be high maintenance!

I am in day 5 of the wash out, where I drop my old treatment, Xalkori, and go through a kind of drug cleanse. Day 2 the body aches hit. When I woke up I wasn't sure what was wrong. At first I thought I must have slipped on the ice because all of my muscles hurt. Then I thought I might be coming down with something, until I remembered that the wash out can come with lots of aches and pains. Xalkori had been doing all sorts of things to my body for 4+ years, and now it is going through withdrawal. If you see me doing my "old man" walk, it is because I am very stiff and sore!

My last Xalkori

So now I hope that the new medicine works and that I can tolerate it. I am happily accepting any well-wishes, prayers, good vibes, positive thoughts, chants, whatever you've got!

Sunday, December 03, 2017

Goodbye Xalkori My Old Friend

Well, we have been waiting for the next sign of progression as the cue that it was time to switch drugs, and it looks like the time is now.

After 4 years and 1 month on my super drug Xalkori, we are looking at moving on to something else.

I had my regular 3-month checkups over the past few days, and the MRI showed 3 tiny new spots (two were so small that the radiologist missed them on their first pass), and there is possible growth (or maybe scarring? They say it is hard to tell) on previously treated spots.

If you have been following this blog for a while, you may recall that I have had brain mets pop up on three separate occasions, and each time we treated them with SRS (sterotactic radiosurgery).

October 2015 - Adventures in Brain Metastases
May 2016 - Brain Surgery Light v2.0
February 2017 - The Best Bad News

We decided that since it seems like this was becoming an ongoing issue, and that there are new drugs in trials that look really good and have brain protection, that it was time to take the leap. The other great thing is that there is STILL no progression in my lungs, meaning that it appears I have not gotten resistant to Xalkori, it is just the known issue that it doesn't penetrate the brain well.

If you are a geek like me and want to read more about the drug, here is their presentation from the World Lung Conference this past October.
Entrectinib in patients with locally advanced or metastatic ROS1 fusion-positive non-small cell lung cancer (NSCLC)

Here is a slightly more reader-friendly version:
Entrectinib Impresses for ROS1-Positive NSCLC

If you are a super geek and would like to read the trial design itself, here you go:
Basket Study of Entrectinib (RXDX-101) for the Treatment of Patients With Solid Tumors Harboring NTRK 1/2/3 (Trk A/B/C), ROS1, or ALK Gene Rearrangements (Fusions) (STARTRK-2)

So, progression is terrifying, but I kinda sensed this was coming. I am very thankful that there is a drug that looks so promising, AND that there is a trial site right here at the University of Michigan so I don't even need to travel for the trial.

I am also immensely thankful for my fellow ROS1ders Janet Freeman-Daily and Lisa Goldman who immediately replied to my message about the crappy news. Not only did they reply with the requisite "oh $!*@", but then immediately started reaching out to their contacts and gave me advice to help me navigate this new journey. They are two of the brilliant people behind the Global ROS1 Initiative, which is working to accelerate research into ROS1 cancers.

On Monday I go in to read and sign the consent form and begin the baseline testing I need to make sure I am accepted into the trial. If I am accepted, then I have to go through a washout period where I go off of Xalkori before I can start the trial. The washout freaks me out since I have heard that Xalkori withdrawal is pretty awful. But first I have to get into the trial so I will worry about that first.

Wish me luck!

In other news, the fam went to a fun holiday party hosted by Kids Kicking Cancer, where the kiddos take karate each week. It is a great program!

Monday, May 29, 2017


Four years ago today I was diagnosed with lung cancer. We wouldn't find our for several days just how bad it was. This time four years ago I was still under the false impression that the cancer was contained in my left lung, that I would be facing chemo and the removal of my lung. That we would be aiming for a cure.

We wouldn't know for several days that it had spread to the other lung, to my spine, my hip, my shoulder blade, my ribs, and my liver. We didn't know yet that the cancer was incurable. We hadn't yet thought of the word "terminal."

The statistics for Stage IV lung cancer are sobering. According to the American Cancer Society, the 5 year survival rate for metastatic lung cancer is 1%. The Lung Cancer Association cites more optimistic figures at 4%.

We had a big, heartbreaking loss in the lung cancer community yesterday. The red headed unicorn, the force of nature, the woman who inspired so many of us, Kim Ringen died yesterday, just a few days short of her 4 year cancerversary. It's hard to celebrate mine when I know she and so many others will not.

So today I'm trying to turn the sadness into thankfulness. We spent the weekend putting in our backyard vegetable garden, and with each turn of the soil I thought about how lucky I am to be able to dig in the dirt, to plant and nurture new life. I try to accept that I need to pace myself, even though my physical limitations frustrate me (as Zander put it, "Mama, you take A LOT of breaks).

Kiddos hard at work

The Garden
I remind myself how much sicker I was four years ago at this time, when I would gasp for air after taking more than a few steps, when I was too weak to stand in the shower, when even a conversation would leave me short of breath.

I remember all this, I think of all the friends who I have lost, and I remember how very lucky I am to be here four years later.

Tuesday, February 28, 2017

The Best Bad News

I'm sure you have all been following my brain met saga with baited breath ;) so today I will bring you the latest MRI results, which are the best bad news.

The MRI literally says "no definitive disease progression" and yet I am planning to have more SRS, aka brain surgery without the cutting. In order to explain how that is not crazy, let me fill in the back story.

I have been taking crizotinib (Xalkori) for my ROS1+ lung cancer since November of 2013. It has been working amazingly well at controlling the cancer in my body, but it has the one big flaw that it doesn't work well in the brain. Therefore, I get regular brain MRIs to keep watch on that area. In September 2015, the first brain metastasis appeared.

In October of 2015 I had SRS for that small brain met, which was successful. (Yay!)

In May of 2016 I had SRS for a new small brain met, which was also successful. (Yay!)

In July of 2016 I had a follow up MRI which revealed two new, tiny (1-2 mm) spots. They were too small to treat just yet, so we decided to watch and wait.

I have been having brain MRIs every 2-3 months since then, and each time they have shown no growth. Upon getting the results for my most recent MRI, my wonderfully thorough radiation oncologist (who deserves the title of Rad Onc), decided to dig a little deeper into my stack of MRIs because, as he put it, "I don't trust anybody." He discovered that when you compare my most recent MRI to the earliest one where these questionable spots appeared, you can actually see some growth.

Then how did each scan show no growth, you wonder?

MRIs are very precise, but if the change between each is a fraction of a millimeter, you will not be able to see it. However, when you add up many fractions of a millimeter, you eventually get 2-3 mm growth. And that is exactly what he discovered when he compared the most recent to the first scan.

We decided it would be safest to do another round of SRS and take care of these mets now, rather than wait for them to grow any more and cause problems. They are still each barely 5 mm, but we don't want them to bring any friends.

So, the bad news is that I am going under the "knife" again, but the good news is that the growth is so very slow that it took some major searching to find it.

I go in for the mask fitting on Friday, and will have the SRS a week or so after that. I hope I can schedule it not to conflict with two adorable little girls turning 6, because that stuff is important!

Let me just say how weird it is that this is so normal to my family. I told the kiddos that some tiny cancer spots in my brain have grown a bit, so we are going to use that big machine to zap them again. My daughter ran over and got my old radiation mask and said, "Here Mama, you can use this again!" It's good that it doesn't bother them much, but it is a very strange thing to be so normal.