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.


Monday, 12 August 2019

Maintenance #4

From the title, readers will realise that I have good news.  After last week's less-than-good news, today I again attended clinic and after one scare, the news was good. 

To remind you, when I attend clinic I receive a blood test.  This is analysed in the unit whilst samples are also sent to the hospital laboratory.  The unit's system reported my platelet count at 67 and thus too low to return to treatment.  Fortunately the laboratory result, which came through during a rather extended wait to see the consultant, was much more welcome at 82 and thus qualifying me to continue.  Last week's paraprotein result also suggested a plateau so I was prescribed the necessary medications for maintenance cycle number 4. Wow.







It seems to have been so much effort and anxiety for just three capsules of Izazomib and the two prophylactic medications.

But it's truly worth it !












KBO

Keep well

Stephen

Tuesday, 6 August 2019

Possible Setback

I attended clinic today and became aware of two matters:  Firstly that my paraprotein which had been at a count of 3 in May, had risen to 5 in June, and to 6 in July.  If it rises any more I will probably be taken off the Myeloma XII trial.  The second piece of news was that today's blood test had indicated a platelet count lower than is safe for me to continue, at this time, onto Maintenance cycle #4.  It is currently presumed that the cause is the toxicity of the trial medication, Ixazomib.  I shall return for further blood test next week to see if things have settled down.

Both pieces of news are rather disappointing and potentially throw some of our plans into doubt.

On a more positive note, my two sons treated me to a fantastic experience - a flight in a de Havilland Tiger Moth.

(Click to enlarge)
The story starts in 2005 when I won a  competition at Old Warden.  The prize was a flight in either a Miles Magister or a Tiger Moth.  Knowing that I could always purchase a Tiger Moth flight later but that no such opportunity would exist for the Magister, the choice was obvious.  This particular aircraft ended its RAF service in 1942.  I was flown Rob Millinship who  allowed me to fly it for most of the sortie.


(Click to enlarge)


My dream to fly in a Tiger Moth finally materialised in July and required an evening drive from home to Eaglescott Airfield in north Devon.  Such flights are very much weather dependent and required that we first drive to Tiverton and phone ahead to see if conditions were suitable - they were.  Having helped to get the aircraft out of the hangar, I was guided into the front cockpit.  Once the engine had been hand started the instructor, Barry, climbed into the rear cockpit.  He then taxied us to the runway and to a leisurely take-off.  From then on, Barry had me fly the Moth whilst he provided an almost continuous commentary on what we could see as we first headed to Barnstable.  We passed over the former RAF Chivenor and thence north to Putsborough beach where the American forces practiced for the D Day landings.  Our flight continued south with magnificent views of Appledore, Bideford and RHS Rosemoor.  Barry continued his commentary all the way back to Eaglescott where he had me circle the airfield whilst we descended.  He even let me land the Moth !  How can I possibly thank my sons for this?

The week after the Tiger Moth flight, Margaret and I had the pleasure to visit our two sons, our daughter-in-law and our grandson.  It was wonderful to see them and to enjoy a memorable evening meal with them.

If life throws you a lemon, add gin
Anon

Churchill's saying seems especially apt this time given not-so-good news: KBO


Keep well
Stephen