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.


Friday, 13 April 2018

The Odyssey Continues

Spring has arrived
I should first perhaps explain the rather cryptic title of this post.  By definition, an odyssey is a long series of adventures especially when filled with experiences, a progress of one stage of life to another.  It seems that odyssey perfectly relates to myeloma.  Anyway I'm bored with the term "journey".

About four weeks ago I started to experience sharp pains in my breast bone.  These gradually became worse and often spread throughout my chest.  Coughing, sneezing and even laughing became less than comfortable. Bone pain is one of the symptoms of myeloma but this was new.  My previous experience was of a dull ache; this was much sharper.

It was thus a relief to report this to my consultant this week.  As usual, and prior to my appointment, I had a blood test.  Given the pain, I had expected that my counts for red and white cells and platelets would have deteriorated.  But they hadn't and my paraprotein level, as measured at my last appointment, was still rising at a fairly constant rate.  Never-the-less my consultant has presumed, like me, that I have relapsed.  Accordingly we discussed my options.

Having prepared myself for the meeting, I was pleased when we agreed that I should be recruited onto a fairly new clinical trial called Myeloma XII.  First I would need tests to confirm my relapse and to ensure that I qualify for the trial.  The tests will include a PET-CT scan, a bone marrow biopsy (oh joy!), an echocardiogram, and yet more blood tests.  

My next appointment is in three weeks and hopefully by then the results of the tests will be known.  I can then recommence my odyssey !

Onto much a much happier theme, during Easter, our younger son visited.  Then last weekend our elder son, his wife and our grandson visited us.  Such events are so enjoyable and reflect the closeness of our family.

You don't choose your family
they are God's gift to you, as you are to them
Desmond Tutu
Keep well

Stephen