Saturday, May 27, 2017

CyberKnife Follow-up MRI and More on the BBB

     As enthusiastic as I've been about the CyberKnife procedure I had to treat my metastatic brain tumor at the end of March, the only way to know if it worked is to have another MRI.  So, that happened last week.  

     I was disappointed when the report stated that the lesion is still there - big enough to be measured.  But, the report also stated that it is smaller than prior to CyberKnife and is "less enhanced".  Overall, the report sounded like it was trying to tell me that it looks like CyberKnife worked.  I realized that among all the questions I asked before and during my CyberKnife procedure, I never asked what to expect of the tumor following radiotherapy. 

     So...now I know.  A few days after my MRI, Wynn and I met with the radiation oncologist.  She entered the room with a big smile on her face and said, "The lesion is smaller and less enhanced, so I'm very happy.  It appears the treatment worked."  Following radiotherapy procedures, and after tumors are exposed to radiation, they usually dissipate slowly.  I had to admit to the doctor that, in my excitement of getting my tumor zapped, I thought it was going to be burned to a crisp...fried...annihilated.  I used the word "poofed".  The doctor, apologetically, said that she usually tells patients what to expect - and perhaps she did, but in my over-zealousness to get the show on the road, I didn't hear her.  

     The other good news I received that day is that there are no new tumors seen on this last MRI.  

     Since my last blog post about the blood brain barrier, (BBB), I've received some replies and comments that had me asking more questions about it.  I asked a few experts more questions and learned that although the BBB's permeability is altered following procedures like CyberKnife, this change in permeability is usually temporary :( .  I was really hoping that the alteration in permeability would work well for me, allowing Xalkori to get into my brain and protect it - forever.  The other thing I learned was that since my tumor was relatively small and the overall amount of radiation I received was low, the change in my BBB would also, likely, be small :( .    

     For now, I will stay on Xalkori because it's working well for me below my neck and I will continue to get regular brain MRIs looking for metastatic tumors.  As long as any future tumors are treatable with CyberKnife, I will continue on Xalkori.  There are two new, second generation, targeted medications, (lorlatinib and entrectinib), that are getting close to FDA approval, both of which cross the BBB.  My hope is that they will be available to me, when I need them, either because they are FDA approved, or through a clinical trial.  I'm scheduled for another brain MRI in 10 weeks.    

Photo credit:  Copyright: <a href='https://www.123rf.com/profile_vectorshots'>vectorshots / 123RF Stock Photo</a>

6 comments:

Wanwan said...

Wow, a sign of relief for now! How intricate, amazing and complex our bodies and their intruders are! Thank you for the update and explaining such a complicated process in lay-woman's terms!

Debbie Pokol said...

You are so incredible. I admire you Luna more than you know . 🙏🏻

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