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.

I received birthday balloons from a very generous person.  Thank you, there was no name on the card and I just got them.  SO THANK YOU!

So as of last week the Car T Cell clinical trial that I was a part of is no longer an option.  Another person died from brain swelling and the trial is on hold, most likely to be cancelled or take a very LONG time before they are up and running again.  Although it was hard to hear this news at the same time it was a huge relief.  I didn’t want to go through the side effects associated with the CAR T Cell protocol.  They aren’t pretty and the majority were neurological.   So this doesn’t leave me a lot of options.  Basically I can take more chemo, be a part of a non FDA approved drug or switch hospitals to be a part of another immunotherapy clinical trial.  Right now there are no answers though.

I get a bone marrow biopsy on Thursday and that will really dictate the direction of the conversation.  It’s a lot of waiting right now.  That’s it.

So flag has been completed for about 7 days now and the nausea could not be more intense.  I have shockingly only thrown up a few times but the meds are helping big time.  I am down in weight again which isn’t surprising.  Still in the hospital just doing the best I can everyday to not be bored.  Going on day 27 I think.  Any suggestions are more than welcome.  I mean I love law and order and SVU but you really can only watch so much of it.  I know what I just put out there but it is too much at times.   Book or movie suggestions are more than welcome my way.

I am officially enrolled in the CAR T Cell clinical trial.  One of a few hundred in the US.  Sine it’s a clinical trail there are a lot more “hoops” to jump through. My day was jammed packed. Yesterday started off with a unit of platletes at about seven AM and then I had my bone marrow biopsy, which they had to take two one and a half inch pieces of bone marrow.  Since they couldn’t get the liquid aspirate that they need, the doctor of course kept poking me.  I stopped counting at like 11 different pokes.  Next was down to IR to put in a temporary vascath in my neck because they didn’t feel as though my arm veins would be able to sustain the amount of pressure that was being put on them.  After an hour and a half wait, finally it was put in.  Back up to the room.  Not more than 5 minutes later they came in for collection of my cells through Aperesis.  Very similar to dialysis.  That took about 3 hours.  It doesn’t hurt and you can’t feel anything but they cycled through my blood twice.  Finally everything was over for the day.  We called the doctor to get my temporary vascath taken out.  So a couple of hours later they came to take it out and let me tell you, it hurts like a mother fucker.  After which the doctor and nurse had to apply pretty substantial pressure to the area for about 15 minutes.  It felt like some weird choking game gone wrong that I wanted no part of.

That takes us to today, which I woke up with a fever, ugh just go away already!   So the game plan is a CT scan of my chest to triple check for any sources of infection.  A unit of blood and then the party really gets going.  I start a chemo regiment called FLAG.  FLAG Chemotherapy  This is typically used for AML so some of it will be adjusted for my ALL, but that is the basic breakdown.  It is two main drugs, Fludarabine and Cytarabine at really high doses and intensity.  I have had Cyarabine before but honestly can’t remember it’s individual side effects. This sill be for five days.  After that you would think that I would be able to go home but, nope, I have to stay in patient until either we start the CAR T Cell therapy or transplant.  The CAR T Cells which takes about three weeks to get back were sent last night to Juno.  It would be great to go home but that is not the case.  I most likely won’t go home until January or February of 2017.  THIS FUCKING BLOWS.  Yup, big time.  Months in the hospitals, MONTHS!

CAR T Cell really gets me going.  I don’t know about you?  But you too should be just as HOT for this immunotherapy.

But what exactly is this whole thing?  Let me break it down for you.

1. Doctors harvest my cells. (takes approximately 30 minutes)
2. Cells then get sent to a lab ( this are going to Juno Labs) where they are then genetically modified to (takes about 3 weeks)
3. phase one of these new genetically engineered cells get put back into my body (approximately 30-40 minutes)
4. Wait for the side effects from implementation (may kick in as quickly as four days)
5. Bone Marrow Biopsy (50 minute procedure, results about one week)
6. phase two of these genetically engineered cells are put into my body if needed. (14 to 28 days after phase one)
7. bone marrow biopsy (50 minute procedure, results about one week)
8. If I am in remission again then we prepare for stem cell transplant.

Number 8 is another animal that we will tackle a bit later

So let’s talk about these amazing side effects? I mean when does the super hero power kick in?  I mean when do I just get the hero card so I can mic drop out of any room?

Worst of the worst:  Cytochinde release syndrome, some of which I went through with the damn Blincyto.  The worst of what I ready oddly enough were intense neurologic problems.  You know confusion of not know where I am, who friends and family are and just overall cognitive thinking is just destroyed?  All of which from patients thus far have cleared up but FUCK. Ohh yeah I forgot that death is a possibility as well.  Whoops how could I forget that one.

This may or may not cure me but I am not looking for a cure.  I just need to get to remission so I can get a stem cell transplant from my older brother Bobby.  That’s the end goal.

On Sunday October 30th after spending only four short days, one of which as a an outpatient still at the hospital for labs, Dr apt, 2 bags of platelets and a bag of blood, I was re-admitted back with a 102.6 degree fever. I wasn’t happy and had no desire to go what so ever.  But of course I did.   For the next few days I spent the days in cold sweats, immense body/joint pain and headaches where I could barely lift my head coupled with fevers in the 104 degree range.  Sounds horrible and it was horrible.  Every single part was terrible.  So during these bouts the team was trying to figure out if this was side effects from the blincyto treatment or an infection.  This we still do not have the answer, yet as of right now.  Regardless the team decided to stop the Blincyto treatment because they felt as though it was not effectively killing enough of the white blood cells.  So I guess we kind of just pissed away $187,0000.00 down the drain.  So just like that no more blimp.  To be honest that shit was rough.  So, million dollar question -what is the next course of action?  I will now be part taking in a clinical trail called Car T Cell Immunotherapy Treatment (protocol title:  The Rocket Study: A phase 2, single-arm, multicenter Trail to determine the efficacy and safety of JCAR015 in adult subjects with relapsed or refractory B-cell acute lymphoblastic leukemia).  I will be one of about 200 other people from around the country participating or have done this.  From what I have read thus far, it is a brutal treatment that is extremely brutal on the body.  For all those really wanting to know the details of the trail, here is  a link to the actual government for submission.  Car T Cell Clinical Trail There is a lot of information that is overwhelming.

So we are going down a path of uncharted territories.  With this new phase, there are a ton of front end tests that we are currently tackling at the moment, like a lumbar punch with IT chemo, MRI, CT Scan of pelvis/stomach, bone marrow biopsy, blood work, and neurological consult just to get to remission.  That is the end goal.  Going through this clinical trial just to go into remission to then go for a stem cell transplant.

Whoa, it is too overwhelming for me to comprehend.  There a lot of moving parts that are scarier than you can imagine. So I guess he million dollar question is when will I get to go home???????  The answer is …..Not any time soon.  On the light side i am gearing up for a wonderful 2 month stay (my guess is it will be more like 3-4 months)  at the loverly Northwestern Prentice Hospital overlooking lake Michigan.  Could be longer.  It really all depends on how my body will tolerate the treatment, which I will dig into more in later posts.  

I am ramped up to be living out of 500 square feet of room without stepping outside.  Good times.  I am just trying to mentally get myself ready for sleepless nights interrupted by vitals/meds/nurses.  Ohhh boy, I am buckled in and ready to do this..