Tuesday, March 14, 2017

Brain Update: It's settled...



...it's a tumor.

      The thought of cancer spreading to my brain has been my worst fear...the kind of fear that brings tears to my eyes whenever I think or talk about the possibility.  Before my cancer diagnosis, I took my brain for granted.  Since my diagnosis, I was grateful everyday that my brain was cancer-free.  

     So now the thing that I feared the most has happened and surprisingly, I'm not freaking out.  I had two MRI studies and an MR spectroscopyInitially, the lesion did not look like a classic metastatic tumor.  I sent my images for second and third opinions and now my case has been reviewed by several oncologists, several neuroradiologists, a radiation oncologist and a neurosurgeon at five institutions, in two states.  After some back-and-forth, my oncologist and the experts are all on board with calling my lesion a metastatic tumor.

     In meeting with the radiation oncologist and neurosurgeon, and communicating with my ROS1 cancer experts, I've learned so much.  
  • Despite my tumor being small, it's deep in my brain - in an area called the corpus callosum.  The corpus callosum is a region of bundled nerve fibers that connects the two hemispheres of the brain.  The good news it that this region isn't the part of the brain that is needed for speech, vision, hearing or cognition.  
  • My tumor is so deep that it would not be accessible by conventional surgery.  However, I'm a great candidate for Cyberknife, aka Gammaknife or Stereotactic Radiosurgery (SRS)If these newer surgical technologies weren't available to me, I would be someone who would be told that I have an inoperable brain tumor. 
  • Over the next week, or so, I will have more imaging, (head CT scan and another brain MRI)The additional scans are needed to precisely calculate the coordinates of the tumor in my head.  These coordinates are then entered into the computer of the robotic machine that will send several highly focused beams of radiation to my tumor. The focused radiation zaps out the tumor, but will not damage other brain tissue.  There may be some damage to tissue directly surrounding my tumor, but it is thought that healthy brain tissue has the ability to repair itself, while tumor tissue does not.  Since my tumor is small and the corpus callosum isn't the region of the brain responsible for important functioning (speech, vision, hearing, and cognition), the chances of me coming out of this procedure any different than going in is extremely low. 
  • There are some side effects, but they are said to be "minimal and last a short time."  Cyberknife is done as an out-patient procedure and there is little to no down time. Most patients don't need to miss work, except for the treatment appointment.  Headache and tiredness are common.  The other, more scary side effects, are less common > rare. I've been struck by how the doctors I've met with and cancer friends who have had Cyberknife in the past, are all so laid back about it.
  • The last thing I learned that I'm very happy to report, is that following a treatment like Cyberknife, the blood brain barrier is opened so that medications that previously did not cross the BBB, get into the brain better.  Therefore, I can expect that Xalkori will work better to slow down more metastatic disease in my brain.  This is important because the next medication for me isn't FDA approved yet, so I need to buy some time.  
     This next step seems scarier than the ones I've taken so far.  Even so, I've been, mostly, able to keep my cool. I knew this was eventually going to happen...it's the natural course of my disease. And because I knew this was in my future, I had a plan.  I just wish I didn't have to execute it this soon.  

    Today I reminded myself of my old mantra:

Image result for keep calm and carry on


  ....and despite having a very bad disease, I continue to feel lucky.


8 comments:

Wanwan said...

Luna, we are pulling for you. This news is scary but you are so fortunate to have all the expert eyes looking at this for you and putting their collective minds together to come up with possible options. Our fingers are crossed!

Shirley Kroot said...

Luna, some negative news and some positive. You have such a positive attitude & it is that that will sustain you for many years to come. See you when we move to Huntley in May. Hugs & prayers fingers crossed.

Stacy Pettit said...

Luna, we are so proud of you. You are strong wonderful person.

Anonymous said...

Luna -
Keep up the positive attitude! Even though the initial diagnosis is not what you had hoped for, it sounds like you have an excellent plan in place to combat the tumor, and medical staff in agreement to ensure you have a good outcome. It all sounds so high-tech - that is amazing that it can be done as out-patient with minimal side effects. Someone really thought outside the box on this one! Tim & I are keeping you in our thoughts & prayers!
-Natalie

Len McGee said...

You are in my thoughts and prayers Luna.
Len

Anonymous said...


Luna, I met you in Denver at the hotel last August at the end of the genetic mutation conference.... I think you are wonder woman and such an inspiration. Keep up your fabulous vigilance and I wish only the best in this latest part of our shared journey ...even mentioned some of your journey with my oncologist today!

Mara Greenberg Frisco, CO

Ann said...

Wow Luna. This really sucks. I know you were not surprised about the diagnosis and I know you are doing a great job remaining calm and rational, but this still really sucks. You've been through enough already. I'm so sorry.

Toni Wills Bac said...

Luna please keep that positive attitude! I'm praying for you! Stay strong and remain calm - - we are all pulling for you!