DARA Cycle 1

As the summary above and the title of this post indicate, I have been successfully recruited onto a new line of treatment involving a novel drug call Daratumumab (typically referred to as DARA.  Its brand name is Darzalex).  

On Tuesday I had a blood test followed with a face to face meeting with my consultant.  She confirmed that I was suitable for this treatment and proceeded to set up the necessary prescriptions for the first, three week, cycle.  

Those good people at Myeloma UK kindly sent me a face mask - quite the part!

On Friday I attended the treatment centre which had temporarily been established in a building called Chapter House.  This is normally used for the training of dentists but Covid-19 had suspended that activity and the facility allowed better patient separation for Haematology and Oncology treatments. I had the 'pleasure' of reclining in a dentist chair for 8 1/2 hours !  A truly amazing facility never-the-less with multiple bays each set out as a dentist's clinic. I believe that there were around 60 such bays- very impressive.  

I have a couple of appointments booked at the BHOC and from then on at The South Bristol Community Hospital which should be an easier journey from home.  I have received appointment details up to and until 14th December.  Somehow with all the disruption due to Covid-19, the BHOC has continued its patient care - very efficient.

In an previous post I mention the installation of a feeder specifically for our squirrel(s).

This is believed to be our male called Cyrill who has now found the feeder and visits regularly. 

The foil acted as an indicator that he had been.

One of my RAF annual assessments included the belief that I feared the unknown.  Reading all the literature I could in advance of my new treatment certainly left me apprehensive. 

Apprehension, uncertainty, waiting, expectation, fear of surprise,
do a patient more harm than any exertion
Florence Nightingale

I'm pleased to report that despite all the concerns I had, they were unfounded. So far so very good.

Keep safe, keep well

Stephen

Update 2nd August

Early this week I had a phone call from my nurse specialist who now had my paraprotein result.  It was rather higher than anticipated and represented an increase in the rate of change.  We discussed my options and preferences for future treatment which she agreed to discuss at the Multi-disciplinary Team meeting.  After the meeting she again phoned me to say that although final decisions needed to be made, my preferences had been agreed to.  Very positively, she would be booking outpatient treatment appointments.  She would also be arranging a face meeting mid August at which I will sign the necessary consents.

Although this has not been the best news, it is by no means unexpected.

Keep safe, keep well

Stephen

Review 21st July

Last week I again travelled to Bristol to provide blood samples and then this week I was phoned by my haematology consultant. The test results showed an improvement in both my hemoglobin and my platelets.  My paraprotein count had not yet come back from the laboratory.  This latter feature will indicate how my myeloma is progressing.  Never-the-less my consultant was content to wait a further 6 weeks before any decisions about treatment are made.  This suits me, as by then the clinical trials that had been suspended due to Covid19 will have resumed.

In my last post, dated 26th June, you will see that I had been preparing to take on a Samarathon - a total of 26.2 miles walking and flying my drone.

I was keen to get started so on the 1st July I walked on Brean Down - getting well and truly rained on!  I then had to wait for better weather before walking Weston-super-Mare's beach on the 8th.  I decided that I needed to complete the challenge as soon as possible so walked the remaining stages on the 10th/11th/12th/ and 13th.  Each stage was walked at or soon after dawn so that there were few people about and thus more chance to fly the drone in accordance with regulations.  Although getting out of bed so early was an effort, the experience of walking as the sun came up, and nature was so active, was so refreshing.  I have collected almost £600 and I am so grateful to those who sponsored me.

The easiest way to see the videos I produced is to open YouTube and then search for my channel name - PEMPILOT.

One of my walks was along Sand Bay and onto Sand Point.  Sadly the video I took from the drone was faulty.  In addition my research has also drawn my interest to St Thomas' Head which is a former MOD site.  I have in mind to explore that area now!

Click to enlarge

In my May post I told you about our two squirrels Cyril and Cybil.  Cyril, in particular, robs nuts from the bird feeder.  The only solution has been to install a squirrel-friendly feeder just for them.  Only put up today we must now see if the nuts on the outside will be sufficient to attract attention.

Look deep in nature, and the you will understand everything better

Albert Einstein

Keep safe, keep well

Stephen

Samarathon

Despite my myeloma and the fact that I've been in Shielding, I've decided to take on Samarathon 2020.  This requires that I complete the marathon distance of 26.2 miles within the month of July.

This can be running, jogging or walking whenever and wherever liked.  I have decided to do mine over six stages along the North Somerset coastline.

Click to enlarge

I've published my sponsor page at: https://samarathon2020.everydayhero.com/uk/stephen-1   and will be providing a series of updates as I progress on my YouTube channel.

Unusually these will provide images taken from my drone

Challenges are what make life interesting;

overcoming them are what makes life meaningful

Joshua J Marine

Keep safe, keep well

Stephen