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, 24 October 2018

Onwards !

Since my last post, little has happened but there has been a significant change regarding my myeloma treatment.

During cycle 5, which is just ending, I was phoned by my trials nurse and told that the paraprotein count at the end of cycle 4 was still at 6.  It has remained at 6 for 3 cycles thus confirming that I have plateaued.  This being the case, there is no benefit in continuing onto cycle 6.  At today's clinic appointment, my consultant confirmed this situation.  This is excellent news as the side effects were certainly hard going at times.  It is necessary now to check what effect, if any, the 5 cycles have had.  Accordingly later this week I have the renewed pleasure of yet another bone marrow biopsy - oh joy!

Also at the clinic, my belief that I do not have any stem cells in storage was confirmed.  In preparation for stem cell transplant, I will need stem cell harvesting preceded with mobilisation.  Last time it proved difficult to harvest stem cells from me (hence the lack of spares now!) so I will be given an extra medication called Plerixafor.

It is perhaps worth listing what is now ahead:

- Bone Marrow Biopsy (to check for any effect from the 5 re-induction cycles)
- Echo Cardiogram and Lung Function tests (to confirm my health before proceeding)
- Mobilisation (involves self-injection of growth hormone and nurse administered Plerixafor in order to cause stem cells to circulate from the bone marrow and into the blood stream)
- Harvesting (one or more days connected to a machine to recover stems cells from my blood stream)
- Randomisation (to determine which of two paths - either standard transplant or enhanced with the trial drug Ixazomib)
- Final checks of my health then ....
- Installation of a central line (this is a tube into a major vein through which multiple medications can be administered, thus saving injections.  At Bristol it is normal to have a PICC line which has two tubes; one for introduction of medications and one for blood sampling)
- Admission for High Dose Therapy and Stem Cell Transplant (I expect this to happen in early December and last for about two weeks)
- Period of recovery (after discharge my immune system will be somewhat weakened.  Recovery can take several weeks, even months).  It is to be expected that recovery will be over the Christmas period which, this year, will be rather "peaceful" !
- Further randomisation (to determine whether I receive maintenance therapy with Ixazomib - or not)

All this may seem daunting.  Firstly, I've previously had HDT&SCT so I know what is coming.  Secondly I only have to do one thing at a time.  Thirdly and most importantly, it is the best possible treatment I can receive in order to control my myeloma.  I am most grateful that my health and circumstances make it possible.

Stem cell research can revolutionise medicine,
more than anything since antibiotics.
Ron Reagan

Keep well
Stephen