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.


Friday, 30 November 2018

First Randomisation

Since my last post, life has been somewhat fraught.  I had two tests to be completed being lung function and a echocardiogram.  These went well confirming that my lungs and heart are in good health prior to further treatment.

On Monday, I had to provide a last blood test to check, amongst other things, that my paraprotein level (a measure of myeloma activity) was within the specified limits of the Myeloma XII trial.  Having been stable for some time at a count of 6, it had risen to 11 and thus, apparently, beyond the limits.  I'm not entirely surprised because I'd been off any treatment for a month but this could have reduced my treatment options.  Yesterday I returned for a further test and fortunately the count is now 10 and within the limits thus allowing the next stage to proceed.  Any research of myeloma will show how patients suddenly find that there are fewer options so initially to be told that I might not be able to continue in the trial was very worrying.  This affects not just me but also Margaret and our two sons.  Over the last week both Chis and then Nick have found time in their own busy lives to travel up and see us.  It has been so good to see them.  Thanks guys.

This morning, my trials nurse phoned to confirm the result of my randomisation.  At this stage in the trial, two options are possible;  Firstly conventional high dose therapy, and secondly augmented high dose therapy.  The latter includes the inclusion of the novel drug called Ixazomib.  In the event my result is to receive conventional high dose therapy (with a drug called Melphalan) immediately followed by stem cell transplant.  Accordingly, on Monday I have a clinic appointment for the installation of a central line called a PICC and then I should be admitted onto the ward for immediate high dose therapy.

It is my hope to that my next post will confirm my admission and then a day-by-day account of my hospital treatment.

As a rule, men worry more about what they can't see
than about what they can.
Julius Caesar

KBO
Stephen

Wednesday, 21 November 2018

Stem Cell Mobilisation & Collection

Firstly I again had the privilege to take part in the Lord Mayor's Remembrance Parade in Bristol.  The public's attendance was truly extraordinary and the weather was kinder than last year.  Recalling our trip to the battlefields of Belgium earlier this year helped me appreciate that the Great War ended 100 years ago to the day.

In respect of my myeloma, things have certainly moved on.  I've had my pre-assessment appointment.  This involved various tests to confirm my fitness to proceed eventually to high dose therapy. Later this week I will have my lung function check and echocardiogram.  The doctor, satisfied with my health, prescribed me the G-CSF (growth factor) which stimulates the excess development of my stem cells.  These then migrate into my blood stream for collection.  This is known as mobilisation.  Since at my previous treatment 6 years ago, when the mobilisation was not has good as hoped, I was this  time prescribed a very expensive drug called Plerixafor.

My mobilisation thus required that I self-inject G-CSF on four consecutive evenings each at 6pm.  On the fourth evening I was to attend the Bristol Haematology and Oncology Centre (BHOC) to receive the Plerixafor at 10pm.  There was a slight risk that I might be kept in the ward if I reacted.  I wanted to minimise the number of journeys my wife Margaret would need to support me with, so I agreed to stay in a hotel on the fourth night.

The following day I attended the apheresis unit at the BHOC.  Blood was taken from the vein in one arm, filtered for the stem cells, and then returned to me through the other arm.  The process takes about four hours and can make at least one arm very sore.  At the start of the process, blood samples are taken one of which is subject to a test called CD34+ which measures the potential for stem cell harvest.  My result was a disappointing 34.1.  Later that day I was phoned to say that, of the 2 million cells per kilogram of body weight needed for transplant, only 1.84 million had been collected.

Thus, later that evening, I again self-injected G-CSF and travelled to the BHOC to again receive Plerixafor.  I was now costing the NHS a severe amount of money! Margaret insisted that I sleep at home that night so took me to Bristol that evening, returning me the next day and collecting me after a further spell on apheresis.  The result of the second collection was 0.89 million.  I now have sufficient stems cells which have been processed and then stored in liquid nitrogen at the NHS Blood and Transplant centre at Filton.

Ahead of me now are the final two tests to confirm my health; a lung function test, and an echocardiogram.  Assuming everything is OK, I will the be randomised within the Myeloma XII trial and then admitted for high dose therapy and stem cell transplant.  I anticipate that the loading on the ward will be the deciding factor on the date.

I have so many people to thank.  Firstly to Margaret who so cheerfully drove me to the various appointments and made sure that I was as comfortable as possible at home.  Secondly to the transplant coordinator who made sure that I was checked, prescribed, booked into apheresis and that my stems cells were processed in the alloted time.  Thirdly the team in the BHOC apheresis unit were terrific.  They answered all my questions, they kept me updated on what can seem a very long process, made me as comfortable as possible, and ensured that my health was maintained.  "Cheerful and professional".

Given the intensity of the treatment I am now receiving it seem only right to sign off, as I have previously done, with a acronym associated with Winston Churchill. I leave it to you to Google its meaning!

KBO
Stephen