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.


Tuesday, 25 November 2014

A Time of Reflection

Today saw me travel up to Bristol for my routine consultant's appointment. Yet again the news was excellent. My paraprotein remains undetectable and my LITEs continue to show improvement. In simple terms Light Chains (LITEs) are a more sensitive measure of the myeloma plasma cell fragments. There are two types; Kappa and Lambda. Since my cancer is IgG kappa myeloma, the actual quantity of kappa and its ratio to lambda is of interest. When last tested my kappa level had fallen to 22.2. This puts it into the normal range of 5.71 to 26.3. My ratio was 2.74 which almost puts it into the normal range of 0.26 to 1.65. If my LITEs continue to fall then I will potentially be considered to have entered Complete Remission.

In simpler terms, I feel very well indeed with only minor back pain (for which I'm prescribed paracetamol!). Being on the Myeloma XI trial I take a drug called Revlimid. It may be this which has brought my cancer under control. Like so many such drugs, there is a risk of side-effects. Without going into details, I only get one and it is entirely tolerable.

Given my current excellent health, I am beginning to question whether this can still be a "myeloma blog". Only time will tell. Certainly it is right to report the good as well as the bad.

It is perhaps inevitable that in visiting my consultant, who is based at the Bristol Haematology and Oncology Centre (BHOC), I will encounter patients whose health is far worse than my own. It is humbling to see some of them. When I was admitted for high dose therapy in July 2012, I met two patients who were end-of-life. It was heart rending to speak to them and to witness their courage. Even now in clinic, I see so many patients in very poor state of health. Unlike the ward, the clinic waiting room is not appropriate for conversation. I can only remind myself just how fortunate I am.

I am a living example of someone who has an incurable cancer but never-the-less has responded favourably to treatment and has an excellent quality of life.

Last month I reported my appointment to be a Magistrate. What I then discovered was a civic aspect of this role. I was invited, as a JP, to attend the Remembrance ceremony in Bristol. Margaret and I mark Remembrance every year so my decision to attend was an easy one. The day was clear and bright and there was a significant public attendance at the city Cenotaph. I found myself with around 60 of my colleagues alongside the Lord-Lieutenant, the Lord Mayor, the elected Mayor, and the city Aldermen. Of note were the many medals worn by young and junior service personnel - an indication of the service they have already seen.


The month seems to have been very much service related. Margaret and I took the opportunity to visit the RAF Museum at Cosford where the Wellington bomber is currently undergoing a major restoration which will take several years. It is only rarely possible for the public to be admitted into the Michael Beetham Conservation Centre. I thoroughly recommend a visit to the RAF Museum at Cosford.

We've also had the very enjoyable experience of attending a concert by the RAF Central Band to mark the 50th anniversary of the Red Arrows. And to think that a certain government considered disbanding them!

Finally I've had word from our Italian host and friend who showed us so much hospitality last year that he has placed a poppy I sent to him on the plaque I presented.


The poppy I left last year has now faded. Some unknown person has added a rose alongside the poppy I provided this year.

This month's saying:

When life gives you a hundred reasons to cry,
show life you have a thousand reasons to smile

Keep well and KBO

Stephen