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