I’ve just spoken to one of the specialist nurses to get the results of my most recent 24-hour urine sample.
Well, that’s a whole other thing… I have to take home a 2.5 litre plastic container, in a very discreet dark green plastic bag. On the day that I’m doing the urine collection, I have to wee in the toilet first thing and record the time, then every time I go to the toilet for the next 24 hours, I have to collect it in the pastic bottle, right through to early morning the following day. I then record the time and some other information and return the bottle to the hospital as soon as possible.
They then send it off to be tested and a couple of weeks later… Bingo! Results time!
The tests for some types of Myeloma look for how much paraprotein is in the blood, but this is for a slightly different type of Myeloma than the one I have. I got confused previously and may have written it up slightly confusingly.
I have what is called Bence Jones Myeloma, which, without going into too much detail, means the Myeloma is only producing the short chains of the immunoglobulins, rather than the whole.
For those who want a bit more technical/medical information about this, you can read the Serum Free Light Chain Assay booklet published by Myeloma UK.
These need to be measured slightly differently, thus the need for a 24-hour urine sample. The blood tests may not always give sufficient detail, as I understand it.
The light chains are called respectively lambda and kappa and one is usually being produced at a higher rate than the other. They aim to not only bring down the rate of production, but to level out the ratio between the two types.
So, finally, to the good news…
The Kappa level was 125.93 and is now 29.97
The Lambda level was 20.84 and is now 28.81
The ratio was 6.043 and is now 1.04
Firstly, I have achieved a drop of over 90% in the amount of Kappa light chains, which is excellent news and I think I reported that previously (in a slightly less clear manner).
And secondly, the ratio is well within the “normal” range of 0.26-2.0.
The nurse advised me at this point, coming to the end of my third cycle of initial treatment, that it may be as soon as following the next cycle of treatment, i.e. 4 weeks away that we will start discussion about the stem cell transplant.
Oh my goodness! I feel slightly overwhelmed and a bit scared. I was hoping to have the early part of the summer to get used to the idea and go for the procedure after my birthday, but who knows… maybe it’s going to come around sooner. Yikes!!!!!