I finally received approval from the FDA for the CD22 drug.  Took so much longer than expected.  Just in time, since my leukemia has decided to come roaring back.  I have felt like crap the last day or so.   They gave steroids (which I HATE) at a very high dose to get it under control.  It’s already helped.  I should be starting the drug as soon as they ship it to the hospital to administer it.  Since this weekend is a holiday it may not be until next week.  Damn holiday getting in the way.  I just want to get this started already.  I never thought I would ever complain about free government day offs but I never thought I would relapse in this capacity either.  My brother had his cells pulled yesterday.  The drugs he had to take for 4 days before extraction were much more brutal than he or I anticipated.  It was almost like the flu with a touch of what it’s like for me to go through when my disease in full effect and bone is regenerating all at once.  He said “I feel like a 90 year old man”.  I can’t even begin to remember how many times I have said that statement these last three years.  Your body just aches in a way that isn’t easy to put into words.  He got a mini glimpse into my world and I don’t think he liked it.  Now we are just waiting for transplant which will take place as soon as I get my bridge.  I just need a bridge and I am so faithful and truly believe this drug will work.

Just found out that the CD 22 protocol will be outpatient, so that means for the next 28 days we will be at home.  Home through the holidays, ugh it’s an amazing feeling to know that.  The pharma company approved release of the drug.  We start treatment as soon as the FDA approves the drug and it is sent to Northwestern, which according to our doctor she is hoping to be this week.  Side effects are minimal but the biggest thing we need to watch out for is liver toxicity.  After that right into transplant, which will be in patient.  Ugh just having a plan in place even if it’s not the greatest for me brings me such a relief that I can’t put it into words.  Just makes me feel better.  I can at least plan a bit for the next 28 days.  Have some sort of “normal” for a little bit longer.

We (my doctor’s mostly) think that the direction we should go in is to proceed with is with the CD22/inatuzamap.  I do have the CD 22 mutation in my blood which is half the equation.  I am glad we are doing this because it’s less evasive than the CAR T Cell therapy, for obvious reasons.  Now the letter of compassion was submitted to the pharma company.  After their approval, that then has to get approved by the FDA.  So we wait.

On a positive note, since we are in this weird limbo stage of just waiting, we are home.  I still go to the hospital every other day.  But, I get to be in my house and not cooped up like a prisoner in the hospital.  I won’t be out long, since they think it will only take about a week to ten days to get through the approval process.  I didn’t think it would matter to go home but it makes all the difference in the world.  I can sleep through the night and it is amazing.  No one taking blood, taking vitals or hanging IV’s at 2 AM in the morning.   Oh, how much I missed sleep.  I forgot what it’s like to be on the outside after 53 days in the hospital.  I will have to go back but it’s a nice break.

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.

It’s taking place tomorrow, not today.  It may not tell us much but at least we are doing something.  It may just tell us that the FLAG protocol didn’t work.  I am trying to be optimistic that it worked.  I will be in remission.  I will next be getting a transplant from my brother.  I am putting these positives into the universe hoping it answers.  I think I deserve a break, finally.