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The main change was that the trials nurse, DP, has moved on to a new role and I wish him well,  He has been replaced by HW who has already settled into the role.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