I am not in remission after FLAG.  It was a slim chance, regardless, about 30 ish percent.  It was a long shot, a hope.  It’s super disappointing to have to go back to additional treatments.  So what do we do now?  Well, we really only have 2 options left.  Yup, down to 2 fucking options, after starting off with all these supposed options and treatments at our disposal.  So I can’t do any more chemo and the CAR T Cell trial is shut down.  So what is next?

Option One:  CD 22 or inotuzumab (as those professional doctors like to call it).  It is a non FDA approved immunotherapy that is by pfizer.  My doctor would have to write a letter of compassion to get the drug.  It is a 28 day cycle with what seem to be minimal side effects, at least comparatively speaking to other treatments.  This had a 50/50 shot to get me to the level I need to be at for transplant.  We just found out that I do have the marker CD 22 in my marrow, now it’s just a matter of how many of my cells have this marker.  The more the better for this one.  So this is still on the option table.  This therapy would be completed at Northwestern and most likely in patient.

Option Two:  A different CAR T Cell Trial called Zuma run by Kite Pharma.  This clinical trial would take place at University of Chicago.  Very similar to the original CAR T Cell that we were going to participate in.  Different mechanism of release and different lab but very similar.  Yes, the side effects are aggressive.  There is a high chance of neurotoxicity with this trial.  There are no results for effectiveness at this time since it is a clinical trial.  At least no one has died from this trial.  So they are already off to a better start.  I am not sure of the process or details of this one but it would be in patient as well.

This is really all the information that I know of right now.  We are finding out more every day as my tests from my bone marrow come back and options get narrowed down.  Obviously I am nervous, scared and all those emotions that come along with the unknown of going down a path less traveled.  But it is better than death.  All I need is a bridge to get me to transplant.  That’s it, just a window to get to clean marrow for them to transplant my brother’s cells.  I mean right now if these don’t work the reality is I am dead person walking.  Counting down days to die.  I know it seems morbid but it is a real thing that I have to learn how to cope with and figure out.  I am not scared of death just the process of dying I suppose.  It’s hard to watch my family go through this.  I think that is the hardest part for me.

More updates to come I am sure.