Tuesday, February 13, 2018

Today’s the Day! [Actually yesterday, 2/12/18]



I am due to get my weaponized T-cells today, probably early in the afternoon.  I’ve been in at Beth Israel since last Wednesday, receiving 3 days of chemo, followed by the weekend to allow my system to work off the toxicity.  The three days of chemo are described as a lymphodepletion process.  The idea is to reduce the number of white blood cells in your system so that the introduction of the CAR-T cells will go smoothly.  Apparently, there are T-Reg cells among the white blood cells that can decide the CAR-T cells are foreign and cause them to be rejected.

Well, I never finished this posting before I received the CAR-T cells.  They gave me a Tylenol and a Benadryl injection before I got the cells, and the Benadryl sure made me sleepy.  Before noon the T-cells came in 2 very small packets.  Clear liquid, and not very much of it.  Yet all blood cells are so small that the number of cells was in the millions.  They had a drip of saline solution going and mounted the T-cell packet above the saline solution, so it would receive priority.  In fact, the T-cells dripped very slowly.  Then the nurse put the T-cell packet below the saline solution and induced saline solution to flow into the T-cell packet.  The purpose was to flush out the last of the T-cells in the packet.  Good to the last drop!

Infusing the T-cells took about 2 hours.  Then they proceeded to take my vital signs (pulse, % of oxygen, temperature, blood pressure) every 5 minutes for the first 30 minutes and then hourly for the next 4 hours.  Apparently, they do this in part for their own purposes to detect any adverse reaction quickly but also because it is required by the clinical trial protocol.  The results are entered into the computer and shared with the people running the clinical trial.  At hour 4 they also took a blood sample which will be used to measure the level of cytokines in my system.  Cytokines are the C in CRS, which stands for cytokine release syndrome, the most likely and most serious side effect of CAR-T treatments.

Originally, I thought that CRS was the result of the CAR-T cells destroying Multiple Myeloma cells.  Not so.  Instead it is the result of the new T-cells setting off a chain reaction of immunological signaling which expresses itself in the release of cytokines.  Cytokines signal that there is something to react to.  But clearly the chain reaction is too much of a good thing.  It is believed that the 1918 worldwide flu epidemic was so deadly and killed so many healthy people at the prime of their lives because it induced a strong CRS reaction.  It spared the elderly and the frail because they didn’t have strong immune systems.  At any rate, that is one of the main reactions that they are looking for.  I almost want to have a CRS reaction, as it will indicate an active immune system.  They do have ways to treat it, depending on how severe it is.

So now it is a wait-and-see game.  They will take a blood sample every 4 hours for 72 hours (3 days!).  The day doctor just checked in and informed me that the blood sample is used to test for a protein marker that indicates the level of cytokines.  The test is not the level of the actual cytokines, but a marker that indicates how active the cytokines are.  So far, I feel fine.  But obviously my sleep will be more interrupted than normal, as they take both vitals (which they always do every 4 hours here on Feldberg 7) and a blood sample.  Plus, they are doing tests of my reflexes (eyes), coordination, strength, and responsiveness.  So far, I am passing the tests, but I suspect I will make their day if I ever fail one.

I will keep up the play-by-play as long as there are interesting things to relate.  But the hope is for nothing visible to happen.  As they say, boring is good!  Today is day 0.  They will take a bone marrow biopsy on Days 14 and 30, which will indicate the level of disease remaining.  You will certainly get a post (happy or sad) then!

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