Bored Silly!

It is now day 14 of my stay here at Beth Israel as part of the CAR-T Cell clinical trial.  I hope to be released next Monday, 2/26, so the end is in sight.  I am in a Phase 1 clinical trial, which means they are looking for side effects.  So far, I have had none.  I am feeling very good, except for my back.  Every day they ask if I have experienced all sorts of bad things.  My answers are always No.  I am told I look good, much as I feel good.  To give them something to note, I inform them that I find it very hard to find a comfortable position in the hospital bed.  But that is nothing new.

I do lots of reading.  The Confession, a John Grisham page-turner.  Radiance of Tomorrow by Ishmael Beah, a novel set in Sierra Leone.  Born on Third Base by Chuck Collins, a good book that everyone should read.  Waking up White by Debbie Irving.  Recommended by my sister Margo, there are remarkable parallels to the Jones family upbringing.  Irving grew up in Winchester, adjacent to Lexington where we grew up.  They vacationed in Maine, just as we did.  All 5 kids attended top flight colleges, just as we did.  All grew up blissfully unaware of their own privileges or the handicaps others had to endure, just as we did.  A remarkable book.

But I for one can only read so much.  Then I lose consciousness.  So, I throw in a little exercise.  I’ve gotten a couple of nurses to climb stairs with me, but most of the nurses are not very keen.  I impose on my visitors, most of whom humor me.  By the time I’ve climbed up 3 flights, I am winded enough that I have trouble keeping up the conversation.  There are the Olympics on TV, but I find I have trouble pretending to care.

Here is Bridget, the nurse who administered the infusion of CAR-T cells a week ago Monday.  

She has just extracted 4 vials of blood from me for the study.  They seem to be extracting lots of blood, lots of times.  Last night it was 9 vials.

You also always have a PCT (Patient Care Technician) assigned to you, who comes every 4 hours and takes your ‘vitals’.  Blood pressure, temperature, heart rate and oxygen level.  Here is Pierrette, with 

the portable device that does the vitals.  The PCT also arranges the supplies for the shower, which is well down the hall, and a major event every morning.

I do spend a certain amount of time on the internet, trying to understand just what I am going through.  Here is a YouTube video recommended by Evadne Moy, a member of Barbie’s chorus who has also supplied several of the dinners that have relieved me from having to eat hospital food 24X7: https://www.youtube.com/watch?v=RpkgLzyUUAA.  I wondered if this video, which is remarkably understandable for a layman, gave an accurate picture of the process.  So, I asked Elizabeth, the person shepherding me through the clinical trial, if she would recommend a link explaining the CAR-T cell mechanism.  Here it is: www.cancer.gov/about-cancer/treatment/research/car-t-cells.  And here is Elizabeth:

Elizabeth comes by every day, and most days gets to administer some questions that indicate if I am losing it mentally.  Counting backwards from 100 by 7, following directions, replicating a drawing of 2 pentagons that overlap.  Apparently if I ever experience the neurological symptoms they are looking for, I won’t be able to do these tasks in a characteristic way.

A big issue for a while was where I would go after being released on 2/26.  The choice was to an apartment close to the hospital or to Brian & Bridget’s in Jamaica Plain.  The problem with JP is 3 boys ages 5, 3, & 6 months.  The older 2 are in day care or pre-school, so they are exposed continually to colds or the flu, and they are germ factories.  The problem with the apartment is that you are supposed to be accompanied by a responsible adult at all times so that if you have a side effect or get sick, they can make sure you get back to the hospital.  Barbie, with the chorus and piano teaching cannot do it Monday afternoon – Friday morning.  We were about to put out the SOS when the doctors discussed my case last Friday.  They recognized the logistical issues associated with the apartment and decided that I could reside in JP.  They made it clear that precautions should be taken (wearing a mask when with the boys, washing hands often), but I can enjoy time with the grandkids.  FAR better than a monastic life in an apartment for 2 weeks!

So, is there any sign of the dreaded CRS (Cytokine Release Syndrome)?  So far none.  They don’t actually measure cytokines.  They measure a liver product, CRP (C-reactive protein) instead.  It would spike if CRS were to happen.  So far, my CRP has been totally normal.  Initially they were taking blood every 4 hours and measuring it.  Then every 8 hours.  Now once a day.  The scale on this graph is 0 – 50 so that minor bumps in the normal range (.5 – 3.0) don’t look significant:

I may be bored silly, but I am incredibly grateful to be part of this program.  If being totally bored is the cost of having all my Multiple Myeloma cells attacked and destroyed by CAR-T cells, I’ll pay the price.  With enthusiasm.  Bring on the terminal boredom!

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!