Christmas Present

Brought out of storage screaming and kicking (me?) our artificial tree is now around 26 years old.  As such it must surely be carbon-free by now.  

It is festooned with many memories especially of our holiday travels over the years.  It even has our late dog’s squeaky ball.

Over the last few weeks I have been making regular visits to the BHOC.  For some time, Margaret drove me to Bristol but most recently I have thankfully been able to drive myself and relieve her of that burden.  The visits have typically been to have platelet infusions and to have the dressing on my PICC line changed.  

One visit included a Bone Marrow Biopsy.  I have genuinely forgotten how many of these procedures I've had but I think it must be at least twelve!  Yesterday I received a phone call from one of the BHOC doctors who gave me the news that the BMB had resulted in no abnormal plasma cells being detected.  Given that I know that my paraprotein count is reducing to very low levels, the latest news is very encouraging.

In respect of Covid, I cannot be given any vaccine until late January.  I am thus shielding and accordingly so is Margaret.  I've been contacted by the NHS and, should I become infected will be given the new anti-viral treatment nMAb.

The latest news about my BMB has been an extraordinary gift. I wish everyone a very Happy Christmas and a Peaceful and Healthy New Year.

Keep safe, keep well

Stephen

After Effects

Every year we are treated to a display of winter-flowering jasmin

The after effects of my treatment continue to require effort both from myself but especially from Margaret who drives me to and from Bristol.

Looking at my diary, last Tuesday I attended clinic needing blood tests and line care (weekly change of my PICC line dressing).  The blood tests identified low platelet count so the appointment was followed by a trip up to get a transfusion.  The following day I was back for a transfusion of two units of blood.  This meant that Margaret left me in Bristol and went home.  Once the timing was known she then returned to collect me.

This week has been similar; blood tests/line care followed by clinic, then yet more platelets.  Yesterday I was treated to an fusion of imunoglobulin.  This is a complicated subject which I can only partially explain.  In simple terms, this treatment tops up my immune system!  Because the treatment can have side effects, the infusion rate is initially slow.  My blood pressure, temperature, respiration and oxygenation were regularly checked.  Little by little the rate of infusion was increased until the expected time of conclusion could be predicted.  This allowed me to phone Margaret and have her collect me - yet again.

All this effort might seem almost too much but firstly it demonstrates the efforts that my consultant and the BHOC are going to care for me.  Secondly I perceive it as investment.  A few months of treatment will hopefully give me a period of remission. My consultant showed me my paraprotein graph which displayed a near-vertical line downwards.

View health as an investment, not an expense
John Quelch

Keep safe, keep well

Stephen

Results

Having been discharged from the ward just over 2 weeks ago I can provide something of an update.  

Certainly I remain fairly weak and have needed to attend review clinics twice a week.  Margaret has been fantastic driving me to Bristol as required.  In addition, I've needed platelet infusions on two occasions.  My consultant says this is to be expected.  He also gave me the exceedingly great news that my paraprotein level has reduced significantly, confirming that the CAR-T cells are indeed attacking the myeloma.  I cannot want for more.

Keep safe, keep well

Stephen

Cartitude 4, HOME !

As you will have realised from the title, I have been discharged from the BHOC.  This happened on Friday after a long and frustrating wait for all the necessary administration to be concluded.  Margaret collected me and we finally got home (having collected fish and chips on the way) at about 6-30pm.

My discharge relied on me not having a raised temperature for at least 24 hours.  I had been given a drug (Tocilizumab) which calmed many of the CRS symptoms.  It worked !

During the last three weeks I have received what is arguably the most advanced treatment for myeloma.  I cannot even begin to explain how important Margaret's support has been for me, and I have been cared for by a world-class team in the BHOC.  I am now back home.  

I am indeed very fortunate.

Keep safe, keep well
Stephen

Cartitude 4 - Hospital

If you saw my previous post then you will know that I intend to provide one post during my time in hospital which I will try to update blow by blow.

...oo000oo...

29th Oct    Excellent news- doctors saw me this morning and have agreed that I be discharged later today. There is quite a process required but such good news. Last night I had been given a drug  to account for the fact I had been retaining fluid. The result was multiple trips to the bathroom throughout the night! 

27th Oct    The last 24 hours have again been memorable for the wrong reasons. I had multiple episodes of high temperature (one in excess of 39 degrees) and uncontrolable shaking. I can only say how fortunate I am to be here in the BHOC.

25th Oct    Life has taken a new character with notably very high temperatures certainly above 38 and on one occasion above 39. These have led to episodes of shivering. I woke this morning to shivering and a very damp bed. I can be given paracetamol but only if the episode are sufficiently spread out. I am told that these symptoms are characteristic of CRS. As the CAR-T cells identify and kill myeloma cells, Cytokine is released which in turn causes reaction by the immune system.  Meanwhile going home on Friday seems unlikely.

24/25th Oct   Just when things seemed to be settling into a routine, last night proved to be somewhat dramatic.  At 10pm my obs indicated a temperatre of 87.8. By 1am it had risen to 88.7 giving rise to concern. The staff have to assume it is due to an infection so multiple tests were carried out. For most of an hour 2 nurses and a doctor were dedicated to me. Once all tests were complete I was allowed paracetamol to counter the fever.  This partially worked as witnessed by the state of my pillow in the morning. In the morning my low blood pressure became apparent. This suggested possible influence of CRS. In other words, my body reacting to the CAR-T cells.  Rather tired, I have spent the day snoozing.

21st Oct    This is now day number 7. Judging by what I'm told about my blood results and my "Obs" (observations - blood pressure, temperature and oxygen level), I'm doing fine.  I also feel well with, so far, no side effects. I am only too aware that ahead of me is a period when such effects do materialise.

16th Oct    Sunday and Day 3 (the trial defines day 1 as being when cells are infused). It has been  5 days since I received any chemo, and today my blood test indicates that I am now neutropenic  meaning that my immune system is currently not functioning ! I must now remain in isolation until my immune system starts to recover and any side effects from the treatment are manageable. 

Margaret visited just before lunchtime bringing vital laundry supplies but most importantly herself. Thanks to mobile phones we can speak every day but her presence is so much  more. 

15th Oct   Yesterday's clarity became a reality today. It is not possible to adequately explain the significance receiving CAR-T cells which had been collected from me on 22nd June as T-cells.  My day started early with the need to get breakfast, showering and dressing completed. A team assermbled to undertake the process: a senior nurse who would undertake the infusion, a pharmacist, my trials nurse, and the head of our trials unit.

Click to enlarge

My cells arrived on the ward deep frozen in liquid nitrogen and contained in what seemed to me to look like an undernourished adolescent Dalek

Click to enlarge

  Inside the Dalek was an aluminium cassette     the purpose of which being to protect the now   very valuable CAR-T cells.

Click to enlarge

Inside the cassette was the bag containing my cells.  These now needed to be defrosted in a water bath. Notably my cells had left me somewhat pink due to red cells. Now any non-white cells had now gone.  The cells were now milky white.

To the strains of "Give me Sunshine" by Morecambe and Wise, the process of infusing the cells took only 25 minutes. Notably they could not travel through the PICC line, instead a canular was required to enable them to free flow due to gravity rather that through a pump.  The rest of the morning was taken up with pre and post checks to monitor my health. I cannot begin to express how fortunate I am.  I have just received one of the most advanced treatments by a world-class team. Thank you.

14th Oct   At last I now have clarity - authority has been sought from and granted by Janssens in Boston USA, that I will receive my CAR-T cells early tomorrow.  Great news. It does mean that I will be kept in hospital for a minimum of 14 days starting tomorrow. All in all I'm feeling fine and this morning's  temperature was below 37 , so very good. Also positive is the fact that the air conditioning is now functional and will keep my room cool as the sun comes round. Last occupying this room in December 2018, I took this picture. Very little has changed. The exercise bike has been replaced as has the bed which can now weigh me!

Click to enlarge

13th Oct   As suggested yesterday, it was decided that infusion of my CAR-T cells should be postponed. I was visited by a consultant I had met before and I knew to be influential resulted in the positive hope to proceed tomorrow, if not then Frjday. Meanwhile I remain on precautionary antibiotics.  Positive mood was maintained at tea time with the offer of birthday cake. The ward checks for birthdays and buys in, at hospital expense,  a cake to celebrate . 

12th Oct   My relocation to new accommodation took place mid morning to a room that I had last frequented in December 2018. The room is configured for my isolation complete with airlock entry. It also has a good view :

Click to enlarge

A visit by the doctor did not bring the best news. The two occasions when my temperature spiked remain unexplained and give rise to concern to me being infused with my CAR-T cell as scheduled tomorrow.  She decided that I should be prescribed antibiotics.  I guess we'll just have to wait and see.

11th Oct    This was the first of two "rest days". There were two notable events. Firstly my temperature spike to 38 degrees necessitating yet more blood tests. Secondly was the announcement at 10pm that both my roommate and I would be moved to new accommodation during the night. In the event he was moved whilst my move to an isolation room had to be delayed  until it could be deep cleaned.

Everyone in the ward knows what these are !

10th Oct   Yet again, my treatment started late in the day. Margaret visited and we agreed that Sunday mornings were the most practical; low traffic levels and easier parking. Notable was the fact that our room, normally too cold was far too hot. This coincided with me having a temperature spike. Normally 36 point something, the first suggestion of a problem was when it was measured at 37.4 then later 37.7. This was a marker for my nurse to keep a watchful eye. Sure enough it went up to 38.3 and without explanation.  I was not neutropenic (my immune system was still intact). This led to massive numbers of tests. Later my temperature dropped to 37.7 but clearly I'm not out of the woods yet.

9th October   Nothing much to report. Treatment started at 6pm to ensure adequate time from yesterday's. The haematology ward has 24 beds and I'm currently in a two man room. If he or I become neutropenic then a single room will probably be allocated. The ward is full and very busy. Some patients very unwell. Today 's treatment will end at about midnight and I'll be woken to take a tablet at 2am.  Hospital is anything but restful! 

8th October    I needed to provide yet more blood samples - these to go to Switzerland. I therefore attended the BHOC in the morning.  I also got the good news that a bed would be available later in the day.  Once the bed availability was confirmed, Margaret drove me back to the BHOC.  Arriving in the ward, everything was ready for me. Various questionaires needed to be completed. To my surprise my treatment was to go ahead immediately. First I needed to be checked by the doctor who signed off the chemo. Then came two different chemos. Compared to the times when I had stem cell transplants these are much milder. As seems typical, no sooner than I'm given chemo, the protocol then seeks to flush it back out. Accordingly the next infusion was a huge bag of saline which was to end after midnight.

7th October  I  was scheduled to be admitted today - Wednesday, First I need to have a PICC line fitted. This is a remarkably painless procedure given that a tube (actually two tubes) are inserted into a vein in my arm which are to be used to deliver medications to a location just above the heart. During my visit I was told that no bed would be available and to go home.

5th October  Tuesday required me to have a second Covid PCR.

4th October  Monday required me to attend the BHOC for my workup clinic which checks my general health and includes an X-ray, ECG, and blood tests. It also accounts for any necessary consent forms.

Cartitude 4, Take Two

If you have been following my blog, you will recall that I was originally to have been admitted for CAR-T cell treatment in late August.  That had to be postponed and in order to control my cancer activity, I was then prescribed a second chemo cycle.  That ended on 20th September and the trial has then required a minimum 2 week "washout" period in order that the medications leave my system.  I have now received the hoped-for revised schedule.

This week I had a further PCR test to ensure that I am free from COVID-19 before being admitted.  On Monday I will attend a workup clinic when my general health will be checked.  A second PCR test will be required on Tuesday.  Then on the Thursday, Margaret will drive me to the BHOC.  She cannot go in so I shall have to attend with my suitcase.  My first appointment will be to have a PICC line fitted.  I've had these on two occasions in the past and they remove the need for injections and cannulas.

After the PICC line, I am to contact the ward to see whether a bed is available.  If not, I shall have to ask Margaret to come back and collect me!  Thank goodness she has plenty of fuel given the current problems.  Hopefully I will be admitted.  

I do not underestimate the effect my treatment will have on Margaret.  For some time I have minimised my trips out and have effectively been shielding again.  Margaret was able to attend a literary event in Bath last Saturday but now respects the need to avoid any infection.  We can minimise the need for her to visit me whilst I am in hospital but thereafter it will be for her to drive me to the multitude of appointments needed to monitor the effects of my treatment.  I have always described Margaret as my supporter but maybe she will have to take on the role of my carer for some time. The trial requires that I cannot be re-vaccinated until after day 100 which means that I shall have to maintain shielding for some considerable time.  Inevitably this will also affect Margaret. 

It is my intention to provide a single blog post which will be updated blow-by-blow during my treatment. This will depend on getting internet access and only if I feel well enough; we'll have to wait and see.  The schedule first requires 3 days of high dose chemotherapy in order to make space for the CAR-T cells.  There will then be two "rest" days to enable the chemo to leave my system.  Only then will my cells be infused.  From then on my time in hospital will be needed to monitor and treat any side effects.

As the blog title indicates, this clinical trial is known as Cartitude 4.  Each trial is a learning process and has potential benefits to treatment options.  It is now 10 years since I was first diagnosed with myeloma.  This cancer is not curable but is treatable.  I have received a variety of treatments but as time goes on, the number of drugs that I will respond to is diminishing and also the amount of time in remission.  This trial gives me the potential benefit of a longer control of my cancer.  It is a phase 3 trial and not without risks.  My clinical team are rightly keen that I understand what is ahead of me.  There is a common risk of Cytokine Release Syndrome when the immune system goes into overdrive. Also common are neurological problems and effects on blood cells.  Fortunately other potential risks are less common.  All the risks range in seriousness from mild to severe but....

If you risk nothing, then you risk everything.

Geena Davis

Keep safe, keep well and KBO

Stephen

Progress

Whilst I am still within a chemo cycle due to end on the 20th, I've received excellent news that my CAR-T cells have been returned to the UK following their processing.  This is something of a relief given their delay through customs back in June.  It is reasonable to assume that since the cells have been returned, they are considered viable. There is an NHS Blood and Transplant facility at Filton and it is there that my cells are currently in cold store.

This image shows a healthy T-cell.

T cells take their name from the Thymus where immature lymphocytes develop and mature enabling them to take up their role as part of the immune system. I was surprised to find that the thymus is located at the upper end of and behind of the breast bone, but in front of the heart

Processing of my T cells converts them to become known as CAR-T cells which will hopefully identify and destroy myeloma cells.  Untrained as I am, I find it less easy to define the meaning of CAR:
C - Chimeric. The best I can find is an association with genetics.
A - Antigen. A substance which induces an immune response.
R - Receptor. A protein which binds with specific molecules.

There you have it, a layman's explanation of CAR-T cells.

Ahead of me is first the completion of this chemo cycle.  I must then wait a minimum of 14 days (washout) in order that the current drugs have left my system.  During that time I will no doubt require a further medical examination and Covid PCR test (s).  It makes sense to also self-impose shielding.  I've got this far and must take every precaution.  Recent trips to the shops suggest that few people (as low as perhaps 10%) are now wearing masks thus surely increasing the risk.

Patience is the art of concealing your impatience

Holbrook Jackson

Keep safe, keep well and KBO

Stephen

Admission Delayed

On Monday I met with one of the doctors at the BHOC for my work-up medical examination and chest X-ray.  Then yesterday I had the first of two PCR tests needed to ensure that I don't take COVID onto the ward.  

Later yesterday I was contacted by my consultant who gave me the news that my admission for treatment, scheduled for next Thursday, would have to be delayed.  The trial had originally specified 6 weeks for the production of CAR-T cells in the USA.  This has had to be changed to 8 - 10 weeks.  Accordingly my cells will not arrive until the end of the month at the earliest.  The blood test taken on Monday revealed the fact that my paraprotein had risen again so he has decided that I should have a further chemotherapy cycle starting on Tuesday next week and to be preceded with a further blood test on Monday.

Clearly the news came as a surprise and a disappointment.  I had waited for some weeks for the admission and had prepared everything for next week.  I have learnt to be patient and to "go with the flow" when such things happen.  I will simply have to wait again.  It is rewarding to note that I am still being looked after though.

The latest schedule suggests admission in early October.  This will mean that, for the second year, a family Christmas will not be possible. So yet another disappointment - especially for Margaret.

It is strange that the years teach us patience,
but the shorter our time, the greater our capacity for waiting

Elizabeth Taylor

Most certainly KBO

Stephen

End of Bridging Therapy

My consultant phoned me yesterday, the end of my bridging therapy.  The trial requires a period of about 6 weeks for the production of the CAR-T cells in the USA and recognises the need to continue to control each patient's myeloma.  This is achieved by a minimum of one cycle of chemotherapy and a choice of one of two medication combinations.  I asked for and was given Daratumumab, Pomalidomide, and Dexamethazone (DPd).  The alternative included Velcade which had previously lowered my platelet count.  Over the last month I have been feeling better and better and this was reflected in my paraprotein count which had reduced from 38 to 16.  The doctor did not want to prescribe for a further cycle, preferring to save this treatment (notably the Pomalidomide) for a future date.

Readers will be aware of Thalidomide which in the 1950s had sadly damaged so many babies.  It was later discovered to have anti-cancer properties.  A derivative is Lenolidomide which I received during the first trial to which I was recruited and to which I responded well. 

The most recent derivative is Pomalidomide which would would seem to be a potential treatment for me.

I first signed to enter the CAR-T cell trial in May.  I now wait to be admitted to hospital for the next treatment. I've then been prodded, poked and sampled but I can wait just a little longer !

Waiting is not always a bad thing;
it can bring its own joy -the thrill of anticipation.

David Jeremiah

Keep safe, keep well and KBO

Stephen

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

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

DARA Cycle 10

 

Spring at last

This week I had my routine (now monthly) blood test and the following day the call from my consultant.  Perhaps unusually, my platelet count was sufficient for me to proceed onto cycle 10.  My haemaglobin, however, was below the threshold normally to require a blood transfusion.  It was agreed that I could arrange the necessary appointments with my Macmillan nurse.

The other bit of (good) news was that I continue to respond to this treatment.

As I write I am eight weeks since my Covid vaccination so can reasonably expect to have good immunity. With shielding now behind me, I am determined to return to something like normal. Most significantly I have decided to return to my role as a Samaritans volunteer listener. I last stood shift so very long ago and I am aware that much has changed in our branch.  My first shift will include mentoring but I am under no illusions that I will feel very inexperienced.

Optimism is the faith that leads to achievement.

Nothing can be done without hope and confidence.

Helen Keller

Keep safe, keep well and KBO

Stephen

DARA Cycle 9

Cycle 8 is now completed and thank goodness.  As suggested in my last post, the these cycles have been characterised by side effects from the three medications. Most notably, I've needed regular platelet transfusions and I've lost energy and become breathless.  

The last 21 days has required me to visit the BHOC twice a week for both treatment and to receive platelet transfusions.  On one occasion I was also recognised as needing a blood transfusion in order to resolve low haemoglobin.  

Changing now to a much simpler protocol with less medications (notably without Velcade) should make things more bearable.  Cycles 9 onwards are considered to be maintenance and last for 28 days each.  As such, I will receive, on day one, Daratumumab and Dexamethasone, then on day two just the Dexamethazone.  My consultant thinks I may need to continue receiving weekly platelets, though this is yet to be confirmed.

Update: Attended BHOC to receive the Daratumamab injection in accordance with the maintenance protocol. Also discover that the protocol also stipulated dexamethasone at greatly reduced dose on days 1,2 and 3.  Given the removal of Velcade, I can have even more hope for reduced side effects.

On non-medical matters, I've now had contract gardeners to cut two hedges that I simply don't have the energy to attend to.  I will also need to make a decision regarding our grass cutting.  If my energy returns then I can do the work, but that seems decreasingly likely.

Life is 10% what happens to you and 90% how you react to it
Charles R. Swindoll

Keep safe, keep well and KBO

Stephen

DARA Cycle 8

I have to admit that I'm glad that Cycle 7 is over.  The side effects of two of the medications had become significant. Velcade had suppressed my blood counts requiring that I receive platelet infusions.  My red cell count was also down resulting in anaemia.  Taking dexamethasone on 8 occasions resulted in sleepless nights and increased tiredness.  My consultant will be prescribing sleeping tablets so at least that condition might be avoided.  

Cycle 8 is the last intensive of the series.  Cycles 9 onwards are maintenance cycles lasting 4 weeks each and requiring only medication on two days.  My consultant is also hoping to recruit me onto another trial which sounds very encouraging.

Recently, there was an article on the television which featured a book "Flying High in the Sunlight Silence".  The author is a highly talented autistic teenager who has created some truly amazing art.  Within the book is a poem by A.F.Harrold who my wife knows.  Margaret wrote to him and he has given his authority for me to publish it here. The poem comes from "The Book of Not Entirely Useful Advice" and also "The Book of Hopes" (read by Stephen Fry).  

A.F.Harrold's website is at http://www.afharroldkids.com

Enjoy the poem and smile:

Keep safe, keep well and KBO

Stephen

Vaccination

 Within days of receiving my invitation, today I've now had the Covid-19 vaccination

Almost by coincidence, I elected to attend the centre at the former RAF Locking at which I spent so much of my career and which is just minutes from home.  The local pharmacy had established the centre and, as you would expect, there were multiple volunteers waiting to guide each recipient through the process. For the record I received the Astrazeneca vaccine. 

I can only marvel at how quickly things have moved on and to say a very sincere thanks to everyone in the NHS and all these dedicated volunteers.

As a postscript, I received my vaccination on the Saturday. On the Monday, I noted that details of it were reflected on my GP records. Most efficient.

DARA Cycle 7

Very little to report.  I spoke to my consultant today and my treatment continues with cycle number 7. One of the measures called serum free light chain has continued to fall indicating at least some response to treatment.  My paraprotein levels also indicate some response.  Importantly the myeloma doesn't seem to be doing me any damage and my pain levels have been brought under control.  

My most recent blood test indicates that I will require a further platelet infusion on Friday but at least I already had an appointment booked for that very purpose.  Soon (in six weeks time) I will have completed cycle 9 and will move to treatment that only involves Daratumumab maintenance and importantly not requiring Velcade (which rends to lower my platelets).  I will then be able to start the process of building my platelet count back up again.

Keep safe, keep well and KBO

Stephen

DARA Cycles 5 & 6

 It's been a while since I provided an update so this covers two cycles. Cycle number 5 went without much incident.

Cycle number 6 started with the first indication that the Bristol Haematology and Oncology Centre (BHOC) might be starting to show signs of strain due to Covid-19.  On the 28th December I attended for a blood test as normal. The following day instead of being phoned by one of the three consultants, I was phoned by a doctor who did not know my case and took some time to self-brief.  Not really a great problem though and I was prescribed for Cycle 6

Treatment started on 1st January.  My treatment requires that I have a minimum platelet count of 30 so a blood test was required.  This showed a count of only 19, thus a transfusion would be required.  It seems that the duty doctor was initially reluctant to get involved (presumably too busy?) - much to the surprise of the nurse.  Eventually platelets were prescribed and infused.  Then much to everyone's surprise, the doctor then required a further blood test.  Inevitably the count had now risen, this time to 58.  All in all that day I had three blood tests ! I did however eventually get the intended treatment.

Yesterday was day 4 and required that I attend for further treatment.  My appointment time had been previously changed and when I was not called in for treatment I wondered what had gone wrong. It seemed that there wasn't a "chair" for me and yet they knew about me. After a delay I was taken into the chemo unit.  My assigned nurse was very apologetic but he had been re-assigned from inpatient duties and thus was perhaps not fully conversant with procedures.  It took some time for him to accept that I first needed a blood test to check my platelet count.  Fortunately when tested the count was 39 so treatment could proceed.  So much effort for one simple injection.

The platelet count of 39 yesterday does not bode well for my next appointment on Friday but at least I have two appointments booked- one for platelet infusion and the second for treatment.

It is perhaps significant that I always write off the day when needing to attend for treatment. This way I hopefully avoid frustration.

Expectation is the mother of all frustration

Antonio Banderas

Keep safe, keep well and KBO

Stephen