And yet more !

Last Friday I had a clinic appointment at which I signed my consent for the clinical trial.  I  was asked multiple questions about my medical history and I was subject to a very detailed physical examination.  I discovered that some of the physical skills that were so easy once, like walking the line, were not so easy now.

Monday saw me again in Bristol for tests.  The echocardiogram took just 20 minutes in which an ultrasonic device was used to scan my heart and surrounding blood vessels.  Cleverly it scans through the spaces between the ribs.  I then had a 2 hour wait until my lung function tests.  Most of these involved sitting inside a glass box and inhaling and exhaling according to the instructions of the technician.  The remaining test involved walking up and down a corridor wearing a device which measured such things as my heart rate and oxygen level both transmitted back to a handheld tablet computer so the technician could monitor my progress.

Postponed from Tuesday to yesterday, I then attended the BHOC for my bone marrow biopsy.  First I had to provide blood samples.  A record for me: I provided 14 phials only one of which was used to check that it was safe for me to have the BMB.  The doctor was very kind and managed to apply sufficient local anaesthetic that I hardly felt anything.  This was especially important as 6 aspirants were taken !

All the samples have now been sent into Europe - some to Belgium and some seemingly to Switzerland. as far as I know, I have now completed all the necessary tests needed to screen me for the trial.  Let's hope !

Keep safe, keep well and KBO

Stephen

More Tests

Last week I had a face-to-face meeting with the radiology registrar to discuss my recent scans.  This was the first time I'd actually seen scans and remarked that, on the MRI, I could see my brain.  The registrar promptly observed that I have a large one !  Also noted was that I have two cracked ribs which I was told is "quite normal".  Looking at the PET scan, there was only slight indication of myeloma activity on one vertebrae.  After discussion we agreed that I would not have any radiotherapy unless the pain becomes worse.  I had recently increased the dosage of Oramorph which had largely addressed this.

I had the opportunity to discuss the significance of the apheresis appointment with the trials coordinator.  As I suspected, this is purely a reservation.  I will be told which arm I'm on later.

I now have further test appointments:  On one day I first have an Echocardiogram.  I've had one before.  It's a painless procedure involving an ultrasound examination of the heart and nearby blood vessels.  On the same day I'm also scheduled for a lung function test.  This will be a series of tests to check the condition of my lungs.  The following day I'm scheduled for a bone marrow biopsy.  This will be my ninth such procedure. It checks the true myeloma activity in the bone marrow.  In my case the samples are taken from my hip bone.

All these checks are to confirm that I qualify for the trial.  It is not until late June that I have a consultant appointment to sign my consent.  Hopefully I will hear more before then.

Keep safe, keep well and KBO

Stephen

Scans

 

This week has been nothing short of busy.  On Tuesday I got a phone call inviting me to a PET CT scan at Southmead hospital.  I agreed an appointment the following day.  I then got a phone call advising me of a blood test at the BHOC on Friday.  Lastly I received a letter advising me of an appointment for an MRI scan that very day (which I had missed).  I spent a frustrating time trying to call the correct department.  Eventually it was agreed that I would attend on Saturday.  Prior to my blood test on Friday I was phoned by the trials team and given the excellent news that I have been accepted into the trial, that I have a clinic appointment in June (at which I will sign my consent) and an apheresis appointment (at which my T-cells will be harvested) the following day.  I am checking to see whether the latter appointment indicates whether I have already been randomised onto Arm B of the trial or whether this is simply a reservation. (Arm A is traditional chemotherapy whilst Arm B is the CAR-T cell therapy)

PET CT Scanner - Click to enlarge

I have previous experience of a PET CT scan also at Southmead Hospital.  The procedure involves being injected with a mildly radioactive marker and then waiting about a hour for it to circulated around the body.  I then had to lie on a (very hard and flat) table which then moves into the scanner.  Two images are generated  The first is the PET (Positron Emission Tomography) whereby the various tissues in the body can be examined.  It is my experience that the sites of cancer growth can often be identified.  

The second image is the CT (Computed Tomography) which produces cross-sectional images of the body in far greater detail than standard x-ray images.

MRI Scanner - Click to enlarge

I have also had an MRI (Magnetic Resonance Imaging) scan in the past.  The obvious benefit  is the lack of x-ray radiation.  For those who suffer from claustrophobia it can be unpleasant as the scanner is very noisy and it is in the form of a tunnel.  MRI is, however, especially good at imaging the bones.  Yet again a had to lie on a very hard and flat table.

I understand that the results of the two scans and the blood test will be discussed at next week’s Multi-Disciplinary Team (MDT) meeting.  Hopefully from that will be a decision if I need any immediate treatment. Just to keep me on my toes, when I got home from Friday’s blood test I was phoned to advise me of an appointment for a Bone Marrow Biopsy.  This will be my ninth.  I’ll leave you to look up the procedure elsewhere ! I’ve also received a further appointment, the details of which I don’t understand but it may be for radiotherapy – oh joy, that might involve two hard and flat tables: one for calibration, one for treatment.

Notable is how quickly I have received tests given the pressure on the health service.  I’m also so very fortunate to live at a time when such advanced technologies are available and, through the NHS, free of charge.

 Sometimes the hurdles aren’t really hurdles at all.
They’re welcome challenges, tests
Paul Walker

Keep safe, keep well and KBO

Stephen

Relapse

It's still spring !

During my last post I reported that, because of my platelet count had improved and that I was responding to treatment.  I also needed a blood transfusion in order to improve my haemaglobin.  All this was sufficiently positive that I decided to return to my volunteering role.  The last few days have, however, been truly dramatic. 

 

First the good news: Yesterday I received my second Covid jab.  The team at my centre (the former RAF Locking) are so very friendly and efficient.  I can only thank them so very much.  As happened with my first jab, the second has now appeared on my health records.

 

At my routine consultant’s telephone call it became apparent that although my platelet count had continued to improve, my paraprotein count was also rising and thus indicating that the myeloma is relapsing.  My consultant then phoned me again to advise that my latest paraprotein result was in and showed further deterioration.  Accordingly I was now off the Daratumumab treatment and invited to a video conference to discuss the potential of being recruited onto a CAR-T Cell trial.

 

Life is about to get really quite complicated and unpredictable.  Firstly, my consultant wishes to assess some of my symptoms so tests and scans will be necessary.  The dates will be dependant on NHS facility availabilities.  When completed I will hopefully then be recommended for a trial  treatment called CAR-T Cell therapy.  There are two paths called Arms which are chosen by randomisation.  In Arm A, I would receive fairly standard therapy.  In Arm B, I would receive the CART Cell therapy. This requires taking some of my T Cells, which are part of the immune system, and sending them to the USA.  Once processed they are returned to me and will hopefully then attack my myeloma.  The overall process is complicated, lengthy and not without its risks.

 

If recommended for treatment I will then be subject to the following schedule:

 

-       Screening (28 days)

-       Apheresis (collection of T Cells taking just 1 day)

-       Bridging Therapy (minimum one cycle taking 28 days)

-       Conditioning (chemo in hospital taking 3 days)

-       CAR T Cell infusion (Probably over 1 day, in hospital)

-       Hospital monitoring (minimum 14 days)

-       Home monitoring thereafter

 

Apheresis to CAR-T Cell infusion is expected to take 5 to 6 weeks.  Time in hospital will be dependant on side effect – some of which can be severe but treatable.

 

In recognition of what my future now holds, and in particular its unpredictability, I have decided, and with sadness, to resign from volunteering.  This time I did not consider being placed on sabbatical to be appropriate.

 

Yesterday is the past, tomorrow is the future, but today is a gift

That is why it is called the present.

Bill Keane

Keep safe, keep well and KBO

Stephen