Summary Text

SUMMARY: First diagnosed with myeloma October 2011. Recruited onto clinical trial Myeloma X11 (Lenalidomide) at Bristol Oncology and Haematology Centre. First High Dose Therapy and Stem Cell Transplant (HDT&SCT) in July 2012. On maintenance until June 2017. June 2018 recruited onto Myeloma XII trial (Ixazomib). December 2018 Second HDT&SCT. On maintenance until February 2020. August 2020 Commenced treatment involving Daratumumab. April 2021 relapsed. June 2021 recruited onto Cartitude 4 clinical trial and infused with CAR-T cells in October 2021. My own immune system is now fighting the cancer . I am exceedingly fortunate.


Saturday, 22 August 2020

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 Nighti
ngale

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


Sunday, 2 August 2020

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