Bad News

The latest Free Lambda reading is 2018, up from 1755.  The hope was that the treatment of Cytoxan last Thursday would have brought that number down.  Not so.  It is not the worst reading ever, but the next to worst.  The general idea was to let the Cytoxan have its effect, and then start a new treatment of something called Elotuzumab next Thursday.  But given the latest direction of the numbers, I am now scheduled for a treatment of Velcade this coming Thursday.  Here is the latest graph:

Velcade has been effective in the past, but it has declined in effectiveness over time, as my disease has evolved around it.  But still it is better than just watching the numbers go out of sight.  The hope had been that my bone pain and hip malfunctions were the result of the various treatments having an effect upon the bone marrow, which at the last bone marrow biopsy was 80% plasma cells (the bad guys.)  If the treatments were having a positive effect, then there should have been a number of plasma cell cadavers messing up the bone marrow.  Apparently, that was an overly hopeful interpretation of what was going on.

Last week I spent the entire week in at Beth Israel.  My calcium and creatinine numbers were poor to start the week, and I was walking with crutches or a walker because I couldn’t put significant weight on my right hip.  They took all sorts of images of my hip and back and head.  The head because I had an episode of double vision, which presumably was just a distraction.  At any rate they gave me lots of fluids, and the kidney function numbers fell into line.  Clearly, I am just not drinking enough water to keep myself hydrated, even though I am making at least an honest effort to do so.  The week before we did discover that Beth Israel has a location in Lexington where we can get an infusion of fluids without having to travel all the way into Boston, so it is much more convenient, especially if hydration via IV is going to become a necessary part of the treatment.

The other issue is that my platelets are low.  So low that I do not qualify [yet] for the clinical trial Dr Nahas wants me to join.  The normal range is 150 - 400, and I hit a low of 19.  They were talking about making an exception because clearly the cause of the low reading it the Multiple Myeloma, but the review board decided to just delay my entrance into the trial until the platelets get back to 50. 

The dates start at the end of January, when things were normal.  Then they got low, came back, and then got really low.  But they are going in the right direction now.

Overall, I am feeling poorly, and I find it hard to generate much optimism.  My torso has general bone pain, and I am walking around with crutches because I cannot put weight on either hip at this point.   I am getting inured to pain meds, but the effect is that I take lots of naps and feel pretty useless.  Sorry to be the bearer of bad news, but that is the situation right now.  But things do change fast.  On Friday, when I was released from the hospital, I felt really good and ready to take on the world.  I certainly hope that returns soon.