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.


Wednesday, 20 January 2016

Potential Change ?

Firstly, Happy New Year !

In the last blog post I mentioned our intention to spend Christmas in a luxury hotel in Bath and also that we both had colds.


This picture shows the superb view from our room out over the city and towards Bath Abbey. Our stay was somewhat spoilt by both of us having those filthy colds. Staying in a hotel at Christmas has been something of an experiment, and one which we don't plan to repeat. The best place for us, unwell or not, is at home over Christmas. Still, we needed to try it.

Margaret recovered from her cold fairly quickly but the same could not be said for me and on the 4th January I saw my GP who prescribed an antibiotic to clear up my cough. Only now, some 4 weeks after the wretched thing started, am I beginning to feel better.

This week I saw my consultant. All news was much the same as usual including the fact that my paraprotein remains undetectable. My kappa result, however, caused some discussion. There are two main types of myeloma - those which produce free lite chains (fragments) known as lambda and those known as kappa. I'm in the second category. Doctors are still learning to interpret free lite chains but they are recognised to be a more sensitive measure of cancer activity than paraprotein. For much of the time that I've been in remission, my kappa has hovered at a low reading in the mid twenties. The blood tested after my appointment in December shows the first real increase to a reading of 51.3. Most patients would truly love to have such a low reading but for me this might indicate change. It seems that it could be caused by the virus that resulted in my cold. Equally it could be the first indication of relapse.

Ever since I went into remission I have known that, at some stage, I would relapse. It is important that it does not come as a shock but simply the need to have further treatment. If the kappa reading returns to my normal or even seems to plateau then there will be no cause for concern. If, however, the reading shows a rising trend then I can expect my paraprotein to return thus signifying relapse. I would then need to plan my life accordingly.

Right now I'm aware that I have hardly exercised because of my virus and the cold weather. As soon as it warms a little, I'll be out walking again.

Walking is man's best medicine
Hippocrates

Keep well, and remember YOLO
Stephen