Tuesday, September 29, 2015

The Other Shoe

From the day I started chemo for my stage 4 lung cancer, I have had nothing but great results. The chemo started working immediately and my breathing improved noticeably after the very first treatment. Each scan showed shrinking (or at least stability) of my tumors and a PET scan even revealed that my targeted medicine Xalkori (crizotinib) had led to a complete metabolic response to treatment.

But everyone living with metastatic cancer knows that this is incurable. We all know that one day the treatment will stop working, one day the cancer will get smarter and find a way around the medicine.

I am on a fancy targeted therapy that has a great track record of controlling cancer in ROS1-positive folks like me. However, it is well known that Xalkori has one weakness, its Achilles' heel: It does not cross the blood-brain barrier. Any cancer cell that manages to slip into the brain can grow freely, unhindered by the medicine.

I bet you can guess where this is going.

My regularly scheduled brain MRI revealed three very small spots where the cancer has taken up residence in my brain. They are tiny and are not causing any symptoms. Thankfully we have been proactive and have been doing brain MRIs every six months to catch this early (if you are on Xalkori and not getting regular brain MRIs, push to get this done). The plan is to get stereotactic radiosurgery, a kind of pinpoint radiation that zaps the tiny metastases. It is brain surgery without the cutting and supposedly there are minimal side effects.

How do I feel about all this? I am strangely OK. I mean, it sucks really bad, but I have been so very terrified to get bad news that in some ways it wasn't quite as terrible as I imagined. After two years of amazing results, the other shoe finally dropped. What this means now is more appointments, more doctors to add to my team and another treatment notch in my belt. They say a criminal finally sleeps well the night he gets caught. Something I dreaded so much has happened, so I can't dread it anymore. Plus, there are still treatments, still reasons to have hope.

This isn't the end by any means. But it is a nasty reminder that the cancer is still there, still working against me, still threatening to take me away from everything I love.

Originally posted at: www.curetoday.com/community/tori-tomalia/2015/09/the-other-shoe

Sunday, September 20, 2015

Small But Mighty: ROS1ers Unite!

The times are a-changin' in CancerLand. Gone are the days when you simply had breast cancer, lung cancer or leukemia. Now each has its own specific type and these days you can often discover what precise mutation is driving the cancer. As I discussed in my post "A Personal Take on Personalized Medicine," my cancer is driven by a mutation called ROS1.

In many ways, knowing this is a GREAT thing. When we found out what was driving my cancer, I was able to stop chemo and instead take a pill called Xalkori (crizotinib) that has been controlling my cancer for close to two years. That's fantastic! So what's the downside, you may ask?

Well, of the over 220,000 new cases of lung cancer each year, only about 1 percent of those have the ROS1 mutation. While being unusual may have a nice charm to it, from a research point of view, it is pretty crummy. Why would researchers focus their efforts on helping such a tiny fraction of people? Us ROS1ers lucked out by riding on the coattails of research for another mutation, ALK, and the drug that I take is actually only FDA-approved for ALK-positive lung cancer. There is no FDA-approved medication specifically for ROS1 lung cancer, it was just a happy coincidence that Xalkori works well for ROS1.

For the time being, this is not a problem. I will keep taking my off-label magic pills for as long as they work. But therein lies the problem — almost certainly, they will stop working someday. There are a few other drugs in trials for ALK that also look like they should work for ROS1, but at some point us ROS1ers have to stop tagging along with our cousin ALK and get some research focused on us.

And herein lies the opportunity. Because we now have the remarkable ability to sequence a person's tumor and discover the driving mutation, ROS1 mutations have also been discovered in colorectal cancer, glioblastoma and others. There are now revolutionary trials underway that are not for lung cancer or breast cancer or prostate cancer, but rather for specific mutations regardless of where they are in the body. Fascinating stuff!

It is true that us ROS1ers make up a tiny fraction of the lung cancer population, but when you add together all of the other ROS1-driven cancers out there, our numbers no longer look so puny. Together we make a group that is worth researching and worth saving. When patients unite, they become powerful activists. If you don’t believe me, read about how a group of lung cancer patients and caregivers petitioned to change the surgical guidelines for stage 4 — and they succeeded! (See "Empowered Patients Change National Cancer Guidelines")

So if any of you out there have a cancer driven by ROS1, please leave a comment below or find me on Facebook or Twitter. I would love to hear more about your treatment experiences and discuss how we can help each other.

Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/09/small-but-mighty-ros1ers-unite

Saturday, September 05, 2015

A Monster Calls

I just finished an incredible young adult book. It is the kind of cancer book I would want to write if I ever write a cancer book. It has monsters and talking trees and tells the truth the way only fiction can. It is so very sad, and it gives me hope. Not the I-think-I-might-be-around-for-a-long-time kind of hope, but the scary, painful, they-will-still-be-okay kind of hope.

"Stories are important, the monster said. They can be more important than anything. If they carry the truth."

The illustrations are stunning, so here is a "book trailer" (I guess that's a thing now?) that gives an overview and shows some of the amazing artwork.

The book was written by Patrick Ness, but as he explains in the Author's Note, the story was conceived by Siobhan Dowd. "She had the characters, a premise, and a beginning. What she didn't have, unfortunately, was time." I'm sure you can guess what caused Ms. Dowd's death at age 47.

Zander saw me reading the book and asked me, "But I thought you didn't like to read scary books? I thought you said scary books and movies give you nightmares?"

What I said: "...Oh, I don't mind some scary books."

What I didn't say: "I already have nightmares about the stuff in this book. Reading it helps me deal with the fears."

To all my cancer pals out there with young children, give this book a read. Or don't. It is powerful and beautiful and very painful, but I'm so glad I read it. When my kids are older, I think they might want to read it, too.

The book is being made into a movie, to be released in October 2016. And my first thought was the same first thought I always have when I think of something scheduled for the future.

I hope I'm still here to see it.