Frustration

You can be forgiven for wondering why I chose the title of Frustration and why the first image is that of a pear.

Let's just say that yesterday things went somewhat pear shaped.

I will try to explain.

Yesterday, Wednesday, I again attended the BHOC as scheduled for bridging therapy.  This involved yet another early start.  Things seemed a little difficult when the nurse could not bring up my treatment details.  Such things are no real problem.  Let's be honest, software has been know to play up and is also prone to duff in - duff out.  

Things did then deteriorate rather more seriously when the trials nurse told me he had received an email indicating that my lymphosytes, the product from Tuesday's aperesis, had left Bristol bound for Germany.  The package had reached Kent (presumably Dover or the Chunnel) whereupon it had been stopped in customs (Brexit perhaps?).  The cells would have been packed in cold containment but would deteriorate with time.  It seemed as though everyone who could get involved was doing so.  Never the less I was extremely frustrated. I did ask why my cells were going to Germany on their way to the USA but nobody seemed sure.

If the T cells became unviable then I would have to go through apheresis again and in the meantime I could not start bridging therapy.  I was to be called with an update later and could go home.  Sure enough just before 5pm I was called and told that the package had been released from customs and would arrive in Germany within the requisite timescale.  Furthermore I was now scheduled to receive my bridging therapy.

This morning was the third early start in a row.  As Margaret once remarked you have to be fit to be ill. It was confirmed that the package had arrived at its destination in Germany. To cut story short, I was given pre-meds and after one hour received received the Daratumumab injection.  I also took Pomalidomide and Dexamethasone (both are thankfully oral).

(Click to enlarge)

This picture shows the various medications and the copious documents I received today.

My nurse likened them to Jenga!

Now back home, all is calm as I embark on the next 4 weeks of  bridging therapy.

It is hardly possible to build anything

if frustration, bitterness and a mood of helplessness prevail

Lech Walesa

Keep safe, keep well and KBO

Stephen

Apheresis

 As you may recall from my previous posts, apheresis is the process of harvesting certain components from whole blood.  In my case white cells and in particular, T cells.  

Things got underway yesterday when I was asked to submit myself for a Covid PCR test.  I had to travel the few miles to the Weston General Hospital where a test crew had been established.  You will have seen the procedure: lean out of the car window and have a swab applied to the throat and nostril.  I'm not sure whether this was required as part of the trial or to protect the apheresis nurses.  Either way I tested negative.

Apheresis Unit at the BHOC (Click to Enlarge)

This morning was an early start to be in Bristol for my 8am appointment. It's amazing how setting out earlier can affect journey time.  I arrived annoyingly early.  The first hour was taken up with clinical trial paperwork and then the taking of blood samples.  Last month I set a personal record of 14 phials.  You guessed it, today that record was shattered - I provided 24 phials. I'm sure that Tony Hancock ("The Blood Donor") would have had something to say.

My 9am I was connected up to the machine: one tube to my left arm, one to my right arm and only one allows movement. The other must not be moved or even bent at the elbow.  In the event I was to remain connected until 1pm; so for a total of 4 hours.  As always, the nurses were so friendly, cheerful and efficient. They seemed to know when to ask how I was getting on and would I like a coffee.

Tomorrow I return to the BHOC to receive my first Bridging Therapy appointment.  The shipping of my T cells to the USA and their processing will take about 6 weeks.  In the meantime I will receive at least one 4 week chemotherapy cycle.  If there were to be any delay in the USA I might be given a further cycle.  I'm fortunate that the doctors have agreed that I should have my preferred combination of Daratumumab, Pomalidomide and Dexamethazone.  This combination only requires my attendance once a week so is almost tolerable.

Things are most definitely now under way.

Smile in a mirror, do that every morning

and you'll see a big difference in your life

Yoko Ono

Keep safe, keep well and KBO

Stephen

Wonderful News

On Monday I travelled up to Bristol yet again for blood tests.  I became aware that efforts were being made on my behalf to prioritise my samples in order to comply with the very strict clinical trial schedule.

This morning I was phoned by my consultant who gave me the wonderful news that I have met all the eligibility criterial for the trial and that I have been randomised onto Arm B.  To clarify, the trial has two "Arms".  In Arm A, treatment is confined to chemotherapy.  Unusually this involves three medications rather than the traditional two.  In Arm B, patients receive CAR-T Cell therapy.  It is this treatment that I will receive.  

To put everything into perspective, the trial only requires 400 patients worldwide.  Of those, only 200 will receive CAR-T Cell therapy.  The trial has registered hospitals in the USA, Australia, Austria, Belgium, Denmark, France, Germany, Greece, Israel, Italy, Japan, South Korea, Netherlands, Poland, Spain, Sweden, and the United Kingdom.  In each of these countries each hospital is listed as "Not yet recruiting" or "Recruiting".  In the UK only three hospitals, one of which is the BHOC, are recruiting.  That has taken considerable effort by my consultant to make that happen.  It has then taken considerable effort to schedule me through the various tests.  Only yesterday, the trial queried something in my medical history.  I am indebted to my consultant and to my trials nurse.  Between them, they have made this possible.

Bristol Haematology and Oncology Centre (BHOC)

The treatment I will be receiving is part of a clinical trial sponsored by Janssen Research & Development.  Myeloma is more correctly referred to as Multiple Myeloma because it is to be found throughout the body.  Whilst radiotherapy can often treat a specific location and thus relieve pain, it cannot resolve myeloma elsewhere in the body.  The traditional treatment is chemotherapy but that cannot cure the cancer, only treat it.  The normal progress means that the cancer eventually does not adequately respond to treatment. 

This treatment seeks to use the body's immune system to attack the myeloma cells.  Next week I will attend the BHOC for a process called apheresis where white cells will be collected from my blood stream.  Those cells will then be sent to the USA where over a period of several weeks the T cells will be modified to recognise myeloma cells.  The T Cells now called CAR-T Cells will then be returned to me.  The treatment is not without risks but the potential outcome is worth everyone's efforts.  

Like all clinical trials, this one seeks to identify effective and safe treatments.  In so doing I get the potential benefit of its treatment.

I had the good fortune and gift to be one of the
twelve men who walked on the moon.
Alan Bean

Keep safe, keep well and KBO

Stephen