December 2023

Firstly, you may have noticed an absence of a post for November.  This was simply because I only needed to attend the BHOC to provide blood samples. The only notable event during that month was my attendance in the Remembrance Parade in Bristol on the 12th.  Perhaps inevitably the rain came down each time I removed my bowler hat!

Recent blood tests over two consecutive months had indicated a very low (2) but meaningful rise in my paraprotein level.  They would seem to have suggested a potential relapse.  This was perhaps confirmed when I was informed that I was to see the haematology lead.  In the event the news was very different.  My November blood test indicated an inability, again, to detect paraprotein.  We could only guess that the previous indications had reinvigorated the CAR-T cells which had done their job and fought the cancer cells.  Only time will tell but I take the news as a significant Christmas present. 

The consultant did check my immunoglobulin level and decided that I should be put back on to IvIg treatment just like I needed during the last two years. No doubt I will shortly be allocated a treatment appointment

One extra bit of news - I've now had my second cataract surgery.  Early indications are that everything went very well.  Remarkably I could even see through the new lens as HRH drove me home after the operation.

No news is good news

Ludovic Halevy

I wish everyone a very Happy Christmas

Stephen

October 2023

As the summary above indicates, I was infused with my CAR-T cells in October 2021 and thus two years ago:

During that time, my myeloma became undetectable, I have not needed any any anti-cancer treatment, and my quality of life has improved immeasurably.  I have seen many more dawns and sunsets than I had the right to expect.  Together with Margaret, I've had a holiday in Cyprus and another where we finally cruised to Norway.  I have even returned to my duties as a Volunteer Listener with Samaritans.  I have every reason to celebrate this anniversary.

Just 10 days ago I had my first cataract surgery where my natural eye lens, which had become cloudy with age, was replaced with a plastic one.  The operation went very smoothly and within 4 days my sight was almost back to normal.  I had feared about driving, especially at night, but I found that the reduced glare had actually improved the experience.  Yet again I feel so very fortunate.

Returning to the subject of myeloma, this week I had my routine clinic appointment at the BHOC.  The last time I saw a consultant was actually in July.  In August and September it was decided that I only needed to see my clinical trials nurse.  This week, the consultant gave me the news that my last two blood tests had both shown a paraprotein count of 2.  I was told not to be too concerned yet as both readings were very small and, importantly, the same.  Significantly my free light chain results currently remain normal.  It was always to be expected that the CAR-T cells would eventually deteriorate and it remains to be seen what these two readings really mean.  Of note, I was also told that all my general blood results were very good.  Having two years without any chemo has clearly made them better.

To summarise - I will just have to wait and see and in the meantime ENJOY.

When you arise in the morning,

think what a precious privilege it is to be alive

to breath, to enjoy, to love

Marcus Aurelius

Keep well, keep safe

Stephen

September 2023

As usual, this week I attended the BHOC for routine blood tests etc. with nothing to report.

Last week I attended an eye clinic following from a recommendation by a certain high street opticians that I be referred for consideration for cataract surgery.  For some time I have become increasingly aware of glare especially when driving.  

The recommendation indicated that I was "borderline" for need for surgery.  The eye specialist I saw last week said that my need for surgery was "absolute" and that I had (until then) an undiagnosed condition called Fuch's Dystrophy (missed despite repeated visits to that high street opticians).  The condition is a deterioration of the cornea which may delay recovery from the cataract surgery and eventually result in need for corneal transplant  Oh well ! Now I just have to wait for a date for surgery.

One last story to tell. Last month I showed an excellent crop of grapes developing on our vine.  I have always used the principle that when grapes start to drop, they are ready to harvest.

Well, this month that time had arrived and we enjoyed a very healthy crop.  These were duly crushed and fermented.  Unlike previous years, though, the juice has proved to be very acidic.  Despite referring to my Boy's Own book of Oenology (look it up), this year I must accept defeat.  2023 clearly is not a vintage year!

A smile is happiness you'll find right under your nose
Phyllis Diller

This month definitely "KBO"

Stephen

August 2023

Just for once I have little to report except, of course, that I attended my monthly appointment and again my paraprotein was undetectable.

We're all experiencing something of a rather strange summer but nature seems to know what to do:-

Grapes almost ready !

As in previous years, our grapes have developed and will shortly be ready to harvest.  Again I will crush them (though not with my feet) and ferment them before adding spirit to make something like port wine.  Best practice requires that I make two bottles: one for this Christmas and one to keep.

I love everything that's old; old friends, old times, old manners, old books, old wine

Oliver Goldsmith

Keep well and KBO

Stephen

July 2023

Again I attended my consultant's appointment and my paraprotein remains undetectable and my light chains (another measure of any cancer activity) remain normal.  

So much is going on in my life and most of it positive.  

First the not entirely good news.  We were due to go on holiday and I discovered a lump in my neck under which I could feel my pulse.  I Googled the situation and became convinced that I might have an aneurism.  I decided to not tell HRH - why spoil her holiday - I would sort it later.  The day after our holiday I tried to get a GP's appointment but one could not be arranged within a reasonable timescale.  I therefore went to our local A&E.  From entering to leaving took a full eight hours during which I had been triaged, seen by a doctor, cannulated, CT scanned, and again seen by the doctor.  The diagnosis was that there was absolutely nothing of concern.

I also waited until after our holiday to get my eyes tested.  Two years ago the  optometrist had reported some cataract development.  Since then the affect has become more pronounced with a marked increase in glare.  This month's eye test resulted in a letter to my GP proposing a referral for cataract assessment and presumably surgery.  Today I was able to book a specialist appointment in September - excellent.

Now the fantastic news.  HRH and I had a holiday involving a cruise to the Norwegian fjords.  Just one of the highlight was my first view of a glacier.

Briksdal Glacier - Click to enlarge

The image above is of the Briksdal glacier which we reached from the village of Olden.  The whole holiday with the sights of Norway scenery and the experience of the cruise was truly awesome (a word I use sparingly)

The best and most beautiful things in the world cannot be seen or even touched - 

they must be felt with the heart

Helen Keller

Keep well and KBO

Stephen

June 2023

A surprisingly busy month.  

First I had yet another birthday - they seem to come round so very often.  For this one I wasn't described a old but instead as "Retro".  Whilst my wife's card to me identified me as being an Honorary Member of the Old Boys Moaning and Groaning Society; a membership that I cannot deny.

This month's consultant's clinic again provided the good news that my paraprotein remains undetectable.  Given such good news I am now returning to a former volunteer role - which requires that I fully re-train.

Growing old is mandatory, but growing up is optional

Anon

Keep safe, keep well 

Stephen

May 2023

As normal I visited the BHOC for my monthly clinic and again my paraprotein remans undetectable and my light chains are normal.  The consultant reviewed by immunoglobulin and is currently content to "wait and see".

The main change was that the trials nurse, DP, has moved on to a new role and I wish him well,  He has been replaced by HW who has already settled into the role.

Since my last post, my improved health and energy, together with improved weather, have enabled several projects.  One of our two garden huts had become clothed with ivy which required two days work to remove.  The other hut, which I had originally constructed, was given two coats of "paint".  The first hut we call "Jabba" and the second "Nissan" - I'll leave you to work out why.  During the Coronation I flew a Union Flag.  I've now installed a proper flag pole and will be able to mark each flag day - the next being the King's official birthday (Trooping the Colour).  I've also cleaned out the greenhouse and planted tomatoes and sown climbing bean seeds.  I can only hope that this year, the slugs don't get them.

It's weird, being the same age as old people

Anon

Keep safe, keep well 

Stephen

April 2023 #2

I recently attended the BHOC for the last of Imunoglobulin infusion in this series.  Happily I again did not react and all went according to plan.  I am indebted to the nurses who took such care with my treatment.

Yesterday I returned to the BHOC and saw my consultant and yet again I was advised that paraprotein could not be detected and my light chains were normal.  In my last post, I mentioned my project to repair the loggia roof.  Since then I've been onto the roof of our dormer and made good where lead flashing had slipped causing one of the wall-hung tiles to drop.  My continued good health allows me to undertake such projects.

You will recall that in March I learned that the NICE appraisal for CAR-T cell treatment would not take place as scheduled and thus its introduction as an option in England could not proceed.  I've now learned that the treatment had been launched in the USA and accordingly the T cell processing facilities were now at capacity and that they could not take on further countries.  A massive shame.  I can only hope that further capacity will become available.

Two falcon chicks being fed - Click to enlarge

Every year I celebrate the arrival of spring.  Sometimes it's the appearance of flowers on the magnolia, sometimes the nodding of daffodils.  This year it has been the hatching of two of the Peregrin Falcons on the roof of Salisbury Cathedral.  This morning the BBC announced that a chick had been seen for the first time on the CCTV.  When I checked I saw that two of the four eggs had hatched and that the parent (mother?) was feeding them.  (To watch this simply Google "Salisbury falcons).  Presumably the other eggs will hatch over the next few days and we will watch the charming little chicks develop into the raptors they really are.  With luck we will see them fledge.

Every spring is the only spring, a perpetual astonishment
Ellis Peters

Keep safe, keep well 

Stephen

April 2023 #1

It seems almost routine to report that, at my recent consultant's appointment, I was given the continuing good news that my paraprotein level was zero.  In addition my light chain result was very good.  Both indications show that my myeloma continues to be controlled by the CAR-T cells.  Yesterday I again attended the BHOC for immunoglobulin  treatment and without any problems.  The next medical challenge is to get my spring Covid booster vaccination - I wait for details.

Click to enlarge

In my last post I reported that I'd re-decorated a bedroom.  Projects continue.  At the south side of our home we have a covered walkway (a loggia) under which we eat al fresco meals, gain access to a garden hut (called Jabba), dry laundry and grow a grape vine (from which I make Port wine).  

I recently noted that some wood rot had set in on the roof structure.  On examination I discovered it was far more advanced than expected and required the replacement of a beam extending over four meters.  The job which required significant planning is now complete.  Probably next on the list is some damage to the side of our dormer.  A wall-hung tile has slipped dislodging the associated lead flashing.  "Man's work is never done."

Getting older is no problem. You just have to live long enough
Groucho Marx

Keep safe, keep well 

Stephen

March 2023

As normal, I attended my consultant's appointment and was again told that my previous blood tests had not identified any paraprotein. I was advised that I would be subject to a further bone marrow biopsy in the near future.  This will be my 15th such procedure!

The other day I attended the BHOC for my monthly immunoglobulin infusion which went without any difficulties.

Since my last post, my consultant asked if I would consider being nominated as a "Patient Expert" in an appraisal by NICE (National Institute for Health and Care Excellence) of what I have come to know as CAR-T cell treatment.

This I willingly agreed to and I was duly contacted by Myeloma UK who would nominate me.  After a series of Zoom meetings with both Myeloma UK and NICE everything was set for the appraisal meeting. I had been asked to prepare a number of documents, the most significant being my Patient Expert Statement which had to be written in accordance with a template.  Sadly I was contacted by NICE just 4 days before the scheduled meeting to say it was cancelled; the company (Janssens) having withdrawn.  This was deeply disappointing not because of the effort I'd made in preparation but more because I wanted to explain, as a patient, just how significant the treatment is.  It is now 15 months since I was infused with my CAR-T cells.  Since then my quality of life has improved immeasurably. Having previously relapsed three times I was running out of treatment options.  CAR-T cell treatment has undoubtedly lengthened my life.

One extra piece of news.  Over the last ten days, I have been re-decorating a bedroom.  Our home was built in 1958 and the room had not been fitted with coving.  A previous owner had installed some but it was very small and of poor quality.  Its replacement took five days.  The walls needed emulsion paint and I chose a one coat solution which went on in one day, without a mess and to an excellent finish. Then came application of eggshell paint on skirtings, door and wardrobes.  This took longer than expected as the wardrobe doors are very fiddly louvres.  The work is finished now and although very hard work, it at least demonstrated my continuing physical abilities.  More projects to follow!

Every project has challenges, and every project has its rewards

Stephen Schwartz

Keep safe, keep well 

Stephen

February 2023

The other day I attended my monthly consultant's appointment at which my health is checked and blood samples taken.  Yet again the blood samples taken in January did not identify any paraprotein and other results were satisfactory.  The CAR-T cells continue to fight the myeloma.

Yesterday I attended for my monthly infusion of immunoglobulin.  This can be quite a long process requiring that I am fitted with a cannula.  To avoid any reaction, I am then given pre-medications requiring a wait of 30 minutes for them to take affect.  The immunoglobulin is then administered, initially at a slow rate. After each 1/2 hour the rate is gradually increased.  Throughout the process, my observations are taken to check for any adverse affects.  Overall the process takes about 4 1/2 hours.

Bristol Haematology & Oncology Centre
(Google Earth Image - click to enlarge)

In the BHOC immunoglobulin is given in one of the outpatient departments.  This unit provides a variety of treatments and I am always humbled to see so many patients who are seriously unwell and needing extensive treatments such as platelet and whole blood infusions.  These can last for many more hours than my treatment.  The care and efficiency of the nursing staff is just world-class. 

Keep safe, keep well 

Stephen

January 2023

Nearly all good News !

At the end of last month I returned to the BHOC to try Immunoglobulin again.  I won't lie, I was extremely concerned that yet again I would react.  Firstly my preference for Privigen had been respected and it was ready for me. Secondly the nurse was so reassuring.  As things turned out, I need not have worried and I was infused without any drama.  

Yesterday I saw my consultant and, yet again, he gave me the news that my paraprotein remains undetectable. My immune system system is still fighting the myeloma.  He did say that my immunoglobulin level remains very low and I must continue with the scheduled infusions.

With uncharacteristic bad timing, in the run up to Christmas I lost my appetite.  Only now is it beginning to return. Luckily I do enjoy a portion of Christmas pudding.

To everyone,  have a very Happy New Year

Keep safe, keep well 

Stephen