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.


Patty T said...

Best wishes to you, Tori that the SRS zaps those spots. Sending you strength for this journey.

Anonymous said...

Sending prayers and good thoughts your way, Tori!


kimmywink said...

Sending you and your family good juju... Hope the zapping goes well for you. xo kim

Anonymous said...

I will take the best bad news. Anything can become normal and you have kept the kids stable and happy. You and Jason. Kudos to that rad onc!!! Which also means you stay on the current med,right? PLEASE say what you need. I will get the kids some small thing.


Anonymous said...

You are so strong and positive. You can zap those buggers and keep on going.. :)
It is amazing kids are so resilient. We are fortunate.
You can look forward to the little 6 year-olds becoming young ladies in no time!
Wish you well,

Kacey said...

I'm so elated to hear that your recent MRI scans have gone well. It must be nerve racking anticipating the results, you are so extremely brave. As a mother you must be strong and hope for the best, especially while keeping up the spirits of your family at the same time. Luckily, you said they think this is the norm for you and aren't too phased. Bless.