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, 3 October 2018

Chemo Days

It occurs to me that whilst my usual posts explain my day-to-day-life, they don't give many details of my experiences regarding the various medications that constitute my current treatment - my "chemos".

I'm currently prescribed three drugs for this phase, called re-induction, of the Myeloma XII trial;
The trial is all about Ixazomib.  This I take on days 1, 8 and 15.  This cycle started without stock so day 1 was missed.  I now have stock so will take today and day 15.  I'm not aware that I have any side effects from Ixazomib.

The next drug, perhaps surprisingly, is Thalidomide which I take every day.  This caused terrible birth defects during the 1950s and 60s.  It is now recognised as having anti-cancer properties. One of the side effects is to cause tiredness which I do experience and one information leaflet recommends avoiding alcohol because of this.  Since I started the trial, over 4 months ago, I have abstained from alcohol.  When this is over I will do my best to catch up !  In the meantime I certainly often feel very tired and lethargic.

The third drug is dexamethazone.  This is a steroid which I take on days 1, 8, 15 and 22.  The trial requires that I take 40mg each time but it is supplied as 2mg tablets.  Yes, on each of these four days I take 20 small tablets which taste very bitter.

20 Dexamethasone Tablets
The certain side effect of dexamethasone is insomnia.  Pretty well without exception, having taken it I will not sleep much that night, despite feeling tired due to Thalidomide.  That means that Thursdays are pretty much a right-off.

Fridays, Saturdays and sometimes Sundays are characterised by constipation.  I can't be sure which of the drugs causes this but probably the dexamethasone or it may be the combination.  The effect is quite severe and whilst it is on-going I feel generally unwell and light-headed.  As if these various side effects are quite enough, I also experience tinnitus which sounds like a high-pitched hiss of varying amplitude.

To summarise then Thursdays - Tired having not slept. Fridays, Saturdays, and some Sundays constipated and generally unwell. Mondays, Tuesdays and Wednesdays somewhat tired and light-headed but my best days.

I'm currently on cycle 5 and must endure these effects to the end of cycle 6 towards the end of November.  My consultant prescribes various other drugs to minimise the side effects.  It does seem that the effects are getting more significant - perhaps cumulative?

I see this as an investment and I do my best to swim through the treacle.  It is to be hoped that, when re-induction is completed, I will feel my usual self again and ready for the next stage of treatment - stem cell mobilization and harvest.

Keep well
Stephen