No point in mincing words. Today's news at the hospital was not good.
Last month I wrote:
"In the first month, FL's Kappa score dropped from 502 to 252. That is a terrific response! But 252 is still a scary number in the world of Free Light Chain Myeloma, so we're not quite breaking out the champagne. "
Just as well we didn't bother with the fizzy wine. Month Two brings the news that his Kappa score has GONE UP to 264.
Except the doctor didn't tell us that. She was very very shifty when FL asked her what his "numbers" were. She would only divulge that his Kappa score was "fairly steady" and she asked what we were told last month. For once, I didn't have the numbers at the forefront of my brain, so it was only when I came back to work and checked the blog that I realised the truth. It is not the sort of "fairly steady" that means DOWN, but the sort that means UP.
When your Kappa score goes up, it is reasonable to assume that the Revlimid is not working, and that the Myeloma is re-asserting itself.
But he was given another (last?) prescription for Rev and Dex and an appointment to go back to the hospital in one month's time. Meanwhile, another blood sample has gone off to Birmingham to check his current Freelite scores. So the June appointment will be critical. If his numbers are up again then... well! What will that mean? His number's up?
Which thought makes me extra grumpy that the doctor didn't tell us the whole truth, upfront, because we didn't have the opportunity to ask her what happens next. Now we have to let our questions brew for another month. Instead, FL got a telling off for not carrying an Anticoagulant Therapy Record Book. We tried to explain that the GP didn't give him one, but she was having none of it. Obviously it is FL's fault. And I suppose he is to blame for the drugs not working too.