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Pivot.

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In true 2020/2021 fashion, our plans have changed last minute.  

We met with Dr. J several times over the past few weeks while we waited for Matt's blood numbers to bottom out from his 96 hour infusion, while keeping our eyes on transplant in March.  Except his numbers never dropped.  What we thought was a good sign of Matt handling treatment fairly well, turned out to be a false hope.  What it really meant is that the 5 day long infusions didn't work.  Like, at all.  Dr. J believes it isn't because of his myeloma being resistant to the chemo but rather Matt's incredible metabolic process burning up the chemo before it had a chance to actually work.  He bases this assumption off the fact that his regular blood counts didn't drop and he suffered very little nausea and fatigue compared to most patients.  Matt isn't so sure, but I prefer that explanation.  Because his numbers didn't go down, that means transplant can't work effectively and ultimately needs to be put on hold. 

We met with Dr. J last Tuesday to discuss the next options and he gave us several trials and regimens to consider.  While sparing you all the details, Matt (and I) decided on a car-t clinical trial here in Chicago called Posieda.  While the car-t works the same way as others I've described in previous posts, it is manufactured using a different process.  This change in manufacturing is supposed to increase the longevity of the car cells while also lowering the toxicity to patients.  The results thus far have been hopeful and Dr. J was enthusiastic about its effectiveness.  While it's not our original plan, it does feel like a good one.  And an allo transplant is still very much an option down the road when Matt's numbers get to a good place.

Matt's team rushed him in to complete all of his testing and required meetings in order to get him in to the clinical trial.  After an awful bone marrow biopsy and 30 vials of blood, we received official word on Sunday night he had been admitted into the trial.  Matt was adamant that we get the final okay before I officially informed anyone of this change in plans.  Monday Matt went back to U of C for a 4 hour long plasma cell collection.  This is where they separate Matt's t cells so they can send them off to a lab and have car cells manufactured and attached.  Hence the name CAR-T. This process will take about 5 weeks.  When U of C receives the cells back Matt will begin reduction therapy, which is similar to transplant in administering high doses of chemo over a few days to reduce his immune system response.  They will then admit Matt and return his modified t cells.  They will monitor him in the hospital for 7-14 days to make sure he is responding well and accepting the cells without complication.  If all looks good, he will be able to come home.  He has a strict schedule on days he has to return for check ups and depending on which arm of the trial he gets, he may or may not have a maintenance therapy after.  Depending on how his myeloma responds, he may receive additional infusions of the modified t cells in the subsequent weeks.  And if all goes as planned, the car-t will do it's job and eliminate all of the myeloma in Matt's body.  Our hope is that it will keep his numbers at 0, he can enjoy some time off all treatment, and we can live a normal life.  A normal life until we decide to do transplant.  Which again, is a very strong possibility.  We just don't know when.  

In the coming 5 weeks, Matt will receive a bridge therapy to keep his numbers stable or reduce them if possible.  He will return again to his old schedule of going in for infusions on Tuesdays and Wednesdays.  The types of chemo he will be receiving are ones he is very familiar with and have worked well in the past so we hope they will have minimal side effects and do what they need to do.

Thank you to everyone who has offered and shown support these past few weeks. You have surrounded us in so much love for these past 5 years and you still continue to amaze us both!! 

For those of you who ordered masks - here is the plan.....

1. Take a picture of you / your family sporting your Ninja Blood masks somewhere fun, exciting, weird, silly or wherever you want in the next few weeks (by the first week in April).

2. If you feel so inclined, you can add text to your photo to offer words of encouragement. (You could also record a video instead of a photo.)

3. Email the pictures / videos to me at mandy.stricker@gmail.com

I'm planning to put them into a movie for Matt to see the day he officially begins the process of car-t.  When Matt enters the hospital, I may once again ask you to snap some pics and send them directly to him so he can see the continued support.  In the meantime, keep those masks a secret and get snapping those pictures! 

If you are interested in sending anything, please reach out to Matt's sisters Emily, Caroline or myself.  

All our love,

Matt & Mandy

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