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.

Friday, October 14, 2016

10 Tips for Coping with Scanxiety

I have my every-three-month scans coming up on Friday, and I am already a nervous wreck. The week or so leading up to my scans I, like clockwork, come down with a nasty case of PSS: Pre-Scan Syndrome. It mimics all the emotional symptoms of PMS, with irritability, heightened emotions and general crabbiness, and lasts through when I get my scan results.

I don’t think scanxiety ever goes away, but as I've gone through more of these I have developed some tricks for trying to deal with the nerves. Here is a list of things that sometimes work for me.

1. Distraction

Binge watch episodes of your favorite TV show. Dig into a great book and get lost in the story. Go somewhere fun that you have never been before. Treat yourself to something that will keep your mind busy thinking about anything but those scan results.

2. Loud Music

Crank up the radio! Blast 80s music! Belt show tunes! It's hard think about scans while reenacting scenes from Flashdance, and I challenge you to feel anxious while singing "Don't Stop Believin'." Trust me, this is some magical stress relief. The science behind it probably has something to do with endorphins, but I am too busy right now rockin' out to "Pour Some Sugar on Me" to care.

3. Acknowledge It

When scan time is coming near, I feel like I need to wear a sign around my neck warning people that I am not responsible for the words that come out of my mouth. I get short with people and am likely to snap at them for no particular reason. Acknowledging what I am feeling and why can help to make it more manageable for myself and those around me.

4. Make Plans for the Worst Case Scenario

While I always hope to get great news, I find that sometimes I can lessen the panic by knowing what the plan will be if the scans are bad. Cancer makes you feel powerless and at the mercy of the disease. Having a plan in place can give back some of that lost feeling of control.

5. Spend Time with a Child

I've written before about the incredible ability that small children have to live in the moment. For them, all that matters is what's happening right now: this game of Go Fish, these orange slices, this third reading of The Very Hungry Caterpillar. Spend the afternoon with a little one and the worries will drift away for a few hours.

6. Pretend You Already Got Good Results

This is totally delusional, but sometimes I can trick myself into imagining that – hey, I already got the results, and they were great! Sure, it only lasts for a few seconds, but those few seconds are a lovely relief from the anxiety.

7. Know When and How You Will Get Your Results

My oncologist only gives the results in person, so I know I will not hear anything until our appointment on Tuesday. For me, knowing this is a relief (although waiting the weekend is a bit of a challenge!), so I don’t sit by the phone all weekend wondering if I am going to get a call. Discuss with your doctor how you will find out the results so that you don't have the extra layer of anxiety, wondering when you will hear.

8. Help Someone Else Out

Sometimes, the best way to relieve your own stress is to help out someone else who is struggling. Help a neighbor, talk to a friend in need, shift the focus off of yourself for a while. It can be refreshing to worry about someone else for a change.

9. Meditate

There are many different strategies for calming the mind, such as deep breathing, praying, positive visualization and physical relaxation strategies. And if those don’t work….

10. Medicate

Let's be frank, depression and anxiety are cancer's annoying younger siblings who tag along and show up at the most inconvenient times. There is no shame in discussing these issues with your doctor and considering taking medication to help.

So, what about you? What are your best strategies for dealing with the dreaded scanxiety?

Originally posted at:

Thursday, July 07, 2016

Listen for Zebras: A ROS1 Lung Cancer Story

There's an old saying in medicine, "When you hear hoof beats, think horses, not zebras." The logic behind the adage is that the common answer is usually the correct one. This is all well and good for the horses, but us zebras can sometimes get lost in the shuffle.

I have ROS1 lung cancer, meaning that my cancer is driven by a mutation in the ROS1 gene. There is an explosion of research currently underway, examining the genetic causes of cancer. ROS1 is rare, accounting for only about 1 to 2 percent of all lung cancers. In fact, it wasn’t until March of 2016 that a drug was FDA approved specifically for ROS1-positive lung cancer. Xalkori (crizotinib) is the drug that has been saving my life for over two years.

I went to a conference two years ago that focused on acquired resistance to targeted medicines. The afternoon sessions broke out by mutation type: EGFR, ALK and ROS1. Us zebras were tickled pink to see eight people with ROS1, since none of us had ever met another one before. "We better take a picture, I don't think there have ever been this many ROS1-ers in the same room!"

Since then, I have been on a quest to track down others with this rare mutation. Along the way, I met up with several others who were equally driven to form a connection and gather us zebras into a dazzle (really – that's the term for a group of zebras). It started as an informal series of text messages where we kept tacking on more people. At some point, one of us said it might be less unwieldy if we just formed a Facebook group. And so we did. This group has become a place for us to share our treatment journeys, discuss clinical trials, exchange advice on symptom management and pool our knowledge. As the months went on, and we told our doctors about the group, we realized what a wealth of information we had amassed.

It was then that the wheels started turning. There is a ton of exciting research happening in cancer these days, but being such a small group had us concerned that we would get overlooked. We are a rare breed, so zebras have to stick together.

Someone in the group suggested approaching the Bonnie J. Addario Lung Cancer Foundation asking if they would create a study just for us. It was a long shot, but we are a group of people with advanced cancer, so what did we have to lose by asking?

When you are in a situation like this, facing an absolutely terrifying and dire diagnosis and prognosis, it is very nice when someone is willing to listen to your concerns. It is even more heartening when they offer to help you. It is a lovely surprise when they take steps to support you. But it is exceedingly rare and wonderful when they actually put muscle and money behind a plan to help you reach your goals.

That is exactly what Bonnie J. Addario and her foundation did.

Over the past few months, a subset of our ROS1 group (which now numbers over 100 people from around the globe) have been participating in conference calls with the foundation to create connections with researchers, health care providers and other stakeholders to investigate this mutation and ultimately create a ROS1 repository that can serve to further research and treatments for our mutation.

You can read more about this incredible, patient-driven initiative on the Lung Cancer Foundation website:

If you or someone you know has a ROS1 cancer, please follow this link the answer an online survey about your disease. This is an easy step to further the understanding of ROS1 cancer.

I am beyond excited to be part of this initiative, and am empowered to be part of a group of patients who are speaking up and being heard. Having metastatic lung cancer really sucks, but I have met some of the most amazing people because of it.

And really, who can overlook a dazzle of zebras?

Originally published at:

Thursday, June 02, 2016

How Much Do You Want To Know About Your Cancer?

I came across this NY Times article, "How Much Do You Want To Know About Your Cancer," and I was moved to comment. Apparently I had more to say than their character limit, so I thought I better blog about it! I'd love to hear other people's perspectives.

The article:

My response:
I am almost *exactly* the patient described in this article, with lung cancer spread throughout my bones and liver. My children, however, were only 4, 2 and 2 when I was diagnosed, and I was acutely ill by the time my doctors finally figured out it wasn't just asthma causing my intense breathing difficulties. This past weekend marked 3 years from that fateful day when I was told that I have cancer. Now, I take a targeted medicine daily to control my metastatic lung cancer. I have been through chemotherapy and brain radiation, but I am able to maintain a pretty good quality of life.

So what should you tell a patient in this situation? We need to know how very serious this is, but that there is always room for hope. We need to know that you, our doctors, will stay by our side and will keep trying to find treatments as long as we are game to keep submitting ourselves to the accompanying side effects. We want you to help us live in the precarious spot of preparing for end of life while simultaneously embracing today. We want you to guide us through the wonderfully daunting landscape of new treatments and clinical trials that are the beacon of hope for those of us living with terminal cancer. We want you to help us reframe what hope means when we run out of treatment options, and we struggle to find meaning in the remaining days.

We want you to bear in mind how absolutely overwhelming this news is. For me, it took several weeks for the fog of shock and despair to lift, before I could even begin to process the enormity of this news. Perhaps the best ways I have heard it told is that "we cannot cure you, but we will do everything we can to try and control the cancer." We need you to revisit this conversation time and time again, as our understanding evolves and our treatment path shifts and changes. 

Tori Tomalia

Friday, May 06, 2016

Brain Surgery Light v2.0

Having been through the halo version of SRS (stereotactic radiosurgery) and the fancy new frameless "Edge" technology, I definitely prefer the latter. This time, they didn't need to numb my head (which didn't regain full sensation for about 3 months), or puncture four spots around my head to anchor the frame (leaving bruising and swelling, plus paralyzing one eyebrow for about a month). 

Instead, I was fitted with this snug little mask which they clamped into the machine. There were also cameras around the room which projected motion-sensor beams, similar to the kind you see in spy movies. If I moved more that 0.5 mm, the beams would break and the treatment would stop. This is how they are able to target a brain met that is only 5mm while causing minimal damage to the surrounding brain tissue. Amazing.

The whole thing only took around an hour, which included getting into the machine, the treatment, and a quick check in with my doctor afterward. 

The mask was much less invasive than the halo, though I found it incredibly tight fitting, almost to the point of me thinking that if the treatment lasted much longer I would need to speak up. I kept reminding myself that I went through unmedicated childbirth, I can handle this. After the procedure I told my doctor about the painfulness of the mask, and he said that he has had two people complain about it, me and a small child. It seems that those of us who don't have a lot of padding have to put up with it basically pressing on bone. Yay.

See the marks it left all over me? That thing was ridiculously tight.

I got to keep the mask, and my kiddos enjoyed playing with it. Each wanted a turn wearing it and lying very still as they pretended to have brain radiation. The other two would pretend to be the robot arm of the machine that delivered the "laser beams" and the other would make the zapping noises. I love how kids process tough situations in such a literal play-acting way. 

Now I am dealing with all the awesome steroid side effects - and thankfully I only have to take them for a few days. Hats off to my friends who have to be on them long-term. They are no fun at all, but they keep the brain from swelling which is, ya know, pretty important. So I've got the body aches, flushed cheeks, weird sleep challenges despite being really tired, and the stomach feeling where I can't tell if I'm ravenous or nauseated. 

The post-SRS effects are primarily a headache (though not nearly as bad as last time), and fatigue, like feeling really exhausted kind of fatigue. 

I will have another MRI in two months as follow up, and the plan is to keep going on Xalkori as long as possible. It has already worked longer than average (1.5 years is the median for ROS1; I have been on it for 2.5 years). In the metastatic cancer world, if something is working you don't want to jump ship too fast. There are a finite number of things that can keep this in check. If the brain mets come at this slow pace, one at a time every 6 months or so, the rad onc feels that it is safest to just keep spot zapping them as needed. If the pace changes, then we will have to look at other options. So, I just keep chugging along.

But ya know? It's not easy. So here's the straight dope.

This is hard. Living with terminal cancer is really, really hard. I think my little family handles it mind-bogglingly well, but don't let our semi-together appearance fool you into thinking this is easy. We have been lucky to have stretches of time where we can let cancer sit on the back burner for a while, but it is always there, always waiting to bubble over and demand attention again. 

Things that are hard while recovering from "brain surgery light":
- 2 screaming 5 year olds
- telling your kids during bedtime stories that no, I will not go downstairs and get you a glass of water. If you really need one, go down and pour a glass yourself. And then hearing a scream and "Mommy! I spilled water everywhere!" And realizing it would have been much easier to just go downstairs in the first place, but lying down felt oh-so-nice.
- cleaning up a 5 year old's poop accident
- feeling guilty as I wonder how many 7 year olds are expected to do the washing up after dinner because mom doesn't feel well
- comforting a screaming 5 year old who had a wipe out getting out of the bathtub and hit her head
- jumping out of bed in the middle of the night because you hear "Mommy, I'm gonna throw up!" (Fortunately, she didn't.)
- explaining to your kids that a beloved teacher has just died of cancer. "But Mommy, YOU have cancer!"
- After thanking your eldest for always stepping up and handling things so well when Mommy isn't feeling good, to hear him say, "I remember before you had cancer, Momma" and hoping he really does remember.

So many of those things are just typical life with small children, which any parent will tell you is not easy on a good day. Throw a major illness in there, and it is just really really hard.
And while I have become very adept at managing the host of fun side effects that come with my daily cancer treatment (my purse looks like a walking pharmacy) and I can give myself shots without batting an eye, it is a daily trudge. We hear so much "rah-rah-rah! Beat that cancer" rhetoric out there, but the story is totally different for the metastatic bunch. There is no end to this. I will be in treatment forever, well, until I die or decide I've had enough. Don't get me wrong, I am immensely grateful to be alive, but it is a strange reality. I remember on a form I had to fill out at the hospital one time, that asked if I ever had suicidal thoughts, and I laughed out loud. I actively choose not to die every day when take my pills. Those of us on this metastatic path are just hoping for a few more weeks, months, dare we hope years of this uncertain life. (I know suicide is nothing to laugh at, and my heart aches for people dealing with mental illness, but the absurdity of that question in that moment struck me as funny.)

So this is hard. Really hard. And I'll reiterate what I thought last time I went through SRS, that whoever said SRS is a breeze clearly didn't have 4 year old twins. They are 5 now, and it still wasn't much easier. Don't get me wrong, I know that this was MUCH easier than having a craniotomy, that Xalkori is much easier than chemo, and that there are much harder things coming for me down the road. But it is still really freakin' hard.

And yet, this is the path I am on, and I desperately hope to keep walking this path for a long, long time. So it goes.