This week I had two hospital appointments. Monday was Haematology, Tuesday was Renal. Monday was a quick in and out, blood test and seeing the consultant who seemed very busy and didn’t chat. Tuesday was a bit more relaxed and smiley.
The best thing was getting the results from Monday’s blood tests on Tuesday from my renal consultant. They measure kidney function in GFR (glomerular filtration rate), which is worked out by a calculation from the level of creatinine in the blood.
When I was first ill in December, my first 4 blood tests put me in Stage 4 (of only 5). The next one worryingly went into stage 5, which was very scary and shocking. I think the creatinine level was 275. I can’t recall the GFR, but it must have been under 15 – that’s really NOT good. I think it’s like saying my kidneys were working at under 15% of their full ‘normal’ function.
Two weeks ago my GFR was around 27. Today’s result shows a GFR of 32, which takes me from Stage 4 down to Stage 3. This is FAB news!!!! Just to be clear though, I don’t feel any different. I am not at all aware of my kidney function on a daily basis.
My paraprotein level was measured the day I was diagnosed (4 Feb), with a result of 4309. (See below for more about paraproteins).
Later on today, I also spoke to Sarah, my Haematology nurse, who told me that the blood test taken 4 weeks ago, after 4 weeks of treatment showed a drop down to 129.6, which is a 97% decrease. I only got this result today, as there was a delay in putting it on the system. Thanks to Ali for helping me work out the percentage mathematically. This is also FAB news!!!!
I won’t have the result for Monday’s paraprotein levels for another 2 weeks as they have to send it away to Birmingham, but am expecting another drop. Since I’ve been receiving treatment, all the things they measure and monitor are moving in the right direction. Hurray!!!!
For those who are confused… “hey, does she have cancer or kidney disease?” I have both! Lucky me!!!!
To clarify… Myeloma creates ‘paraproteins’ which have no use except to clog up the kidneys. Myeloma also kicks out calcium from my bones into my blood, which also clogs up the kidneys. So, the myeloma creates the kidney disease – in two ways! As we treat the myeloma, we also treat the kidneys and happily they’re both responding brilliantly.
I have been thinking a lot about the language used around cancer and what language I choose to use when writing/talking about my experience of cancer and why. I want to write more about it in another article.
Anyway, to be eligible for a stem cell transplant, I need to show at least a 90% decrease in paraprotein levels. As you can see, I have already reached that and as long as I don’t have some weird retro response where it goes back up again – highly unlikely, then we will wait for the level to drop unti it reaches a plateau, i.e. stays around the same low level for over a month. At that point, I will be put forward for the stem cell transplant to consolidate the gains made by the initial treatment and hopefully go into remission.
Hope that helps make sense of this bewildering and unusual condition.