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, 19 February 2020

Relapse

Although the title suggests bad news, not all is - far from it.  I saw my consultant yesterday and yes, the fact that my paraprotein had continued to rise (9 in January) meant that I have been withdrawn from the Myeloma XII clinical trial.  The best news, however, is that I have been given full permission to go on holiday in May.  In the meantime I am on "wait and see". It is to be hoped that my platelet count, which is below normal and probably due to the effect of the trial drug Ixazomib, will start to improve.

Because I was being withdrawn from the trial I was asked to complete a "quality of life" survey, I was subject to additional blood tests, and treated to yet another bone marrow biopsy.  The biopsy is, I think, my eighth !  This one only involved "aspiration" and was without any significant discomfort thanks to the efforts of the doctor and the practice nurse.

You will recall that, last month I recorded my disappointment that the manufacturers of Altoids mints had withdrawn sales in the UK.

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This morning, much to my surprise, I received a parcel.  Looking at the multiple labels it became clear that it had originated in the USA.  On opening it I found six tins of Altoids !

It would seem that UK customs have checked the contents as the outer polythene wrapper had been opened.

Speaking to our elder son at the weekend, he had asked if I'd received any parcel recently - no I hadn't.  "OK" he said.  All was now obvious: Having read last month's blog, he had ordered the mints from the USA to be delivered direct to me.  In a phone call this morning I was able to say a very big thank you.








It is not flesh and blood but the heart which makes us fathers and sons.
Johann Schiller
Keep well
Stephen