“You’re Still Alive!!!!”

As I walked back in the front entrance of MD Anderson after having been across the street getting my CT, the masked nurse handing out yet another new mask to don wildly exclaimed, “You’re still alive!!!!”  “Well, yes ma’am, I am!” I replied!  Cathy had been my first nurse in the Stem Cell department years ago.  I’m amazed that she still recognized me after all these years, wearing a mask, and with all the patients that she sees, but we did spend a LOT of time together.  She was my beloved Dr. Shah’s nurse before she got whisked away to mentor a new doctor and teach him the MDA ropes.  (She’s now been through several newbie’s! Bless her heart!)

 

We caught up on all my treatments and her assignments and I went on to my next appointment.  But that encounter pretty much wrapped up all I wanted to say.  For those who would like more of the actual details, stay tuned.  I have neglected writing my blog for a while.  Life has gotten even busier with juggling my business, my MDA schedule, taking care of my mom, plus regular home and family stuff.  This outlet has unfortunately gone to the bottom of the list.  But with Cathy’s exclamation, I knew a blog post was in order…then with the news I was about to receive, there was no doubt!

 

After all my pre-tests in January (when they found the dreaded spot in my kidney), I started my newest leukemia trial on February 11…just before the infamous Snowmageddon here in Texas!  Brrr!  Still makes me shiver just thinking about it!  And many are still recovering from its damage.   Mercy! 

 

I am part of the AVO trial…Acalabrutinib, Venetoclax, and Obinutuzumab.  I know…who makes up these names?!!  As a randomized trial, ½ of the participants got the O drug up front and the other half (including me) went straight to the A drug for two months, then on to the V drug, starting with the ramp up dose of 20 mg and increasing each week until we got to the full dose this week of 400 mg.  If at month 14, I am not where they want me to be, I’ll get the O drug on the back end. 

 

BUT, my counts have already dropped from the crazy high numbers they were to the high normal range as of this week!!!  I have NEVER experienced a protocol that has worked this well, this fast!  What’s even more exciting is that I learned that folks who have been on Venetoclax prior to this trial have experienced long term MRD (minimal residual disease)…4-5 years!  In my disease, there is no cure.  But detectable and/or undetectable MRD is achievable. U-MRD is determined by a Flow Cytometry test and defined as not finding any CLL cells down to a level of one in 10,000 cells.  It helps determine decisions about therapy, is a marker for being progression free, and determines overall survival.  We’ll do that at month 14.

 

On a second let’s see how great of a 60^th birthday a gal can have note…I met with my kidney doctor for my CT results.  After asking me all the typical questions, the results were pulled up on the computer and with quite an air of confusion, excitement, disbelief, and relief…announced that my mass had reduced in size by HALF!  All by itself!  What?!!  How?  Well, we don’t know!  I asked if it was possible that my leukemia drugs are positively affecting my kidney cancer?!  They said that typically cancer drugs do not cross over.  A few do…but mine are still relatively new and have not been tested in this area.  Well, maybe they should! 

 

They are going to check me again during my next scheduled CT with my leukemia folks at month 9, which will be in about six months, to see if it is continuing to shrink or what.  But for now, my kidney function is normal!  And the mass is much smaller!  

 

So this AVO trial has been a complete WIN/WIN so far!!!  Other than a few minor side effects that are really no big deal in the big scheme of things, I am beyond elated!  Yesterday as I celebrated my 60^th birthday, I could really for the first time in years, confidently believe that I could actually see 70…75!! 

 

I can see my grandchildren graduate.  I can dance at their weddings!  I can hold a great grandchild.  Paul and I really can retire to Oletha.  We really will be able to empty some of that bucket list.  I AM GOING TO LIVE!

Thank you for praying with me.  Thank you for believing with me.  And thank you MD Anderson and all who do research for saving my life. 

 

To God be the glory forever and ever.  Amen.