Recently I have gotten very different Free Lambda
readings. Since I was released from the
hospital they have taken Free Lambda tests weekly. When the readings are positive (lower), I feel
great. When they are negative (higher)
not so great. I find it useful to graph
the results, as a picture tells me more.
So when the graph looks like this:
And the right end of the graph is decidedly DOWN, I feel
great. This was accompanied by a Bone
Marrow Biopsy (BMB) with a reading of 30%.
That means 30% of a particular type of cell in the bone marrow is
affected by Multiple Myeloma. I have
access to the BMB reports through the patient portal at Beth Israel, but they
are gibberish to me. But again, a lower
number is better. The clinical trial
requires BMBs, as there are several different flavors of Multiple Myeloma, and they
don’t all result in elevated levels of Free Lambda.
But the very next week, the results were not so good:
Not only is the graph now going up, it was accompanied by a
BMB where the result was 50%. The doctor
said not to panic, but it is hard not to.
She explained that the higher % could be the result of finding fewer of
the cells they were looking for in the sample from the interior of my
bone. As I explained it to Barbie, if
the first BMB found 10 cells and 3 of them were Multiple Myeloma cells, that
would be 30%. But if the second test
only found 6 cells, then 3 Multiple Myeloma cells would be 50%. All that makes a certain amount of sense, but
I was very aware that I was straining reality to put a positive spin on things.
So the next week had a very different result:
Here we are again, going down very positively. In fact, when you look at the graph over the
entire time I’ve had MM, the end looks even more dramatic:
The right hand tail of the graph is really going down. I felt
great! In fact by isolating the last
part of the graph, it looks like a lightning bolt:
Naturally, this last Friday the results were not so
positive. Again, the Free Lambda went up
slightly. The doctors explain that the
tests are not exact. There is sampling
error, statistical error, measuring error.
So we should not look at any reading as an exact number. Instead it is within a sampling error of the
actual value. So the thing to look at is
the long term trend. Again, as a
patient, I can hear them telling me to be patient, not to hit the panic
button. But it happens anyway.
When you take the end of the full range graph, what was a
lightning bolt is now a bit of a hockey stick:
It is still better than if it went up significantly, and it
clearly must be within a statistical error of a good reading, but it is still
going in the wrong direction.
Generally, except for my back, I am feeling good. As I sit here at my computer, I feel
fine. But if I stand for a long while,
my back gets tired fast. I discovered that
using a walker at the Museum of Fine Arts in Boston relieved my back of much of
the stress of my weight hunched forward.
I plan to use the walker (assuming it is OK for outdoor use) in the
Multiple Myeloma Research Foundation 5K race/walk on April 29th. I have appealed to the usual range of
suspects, and you friends and family have come through in a very generous
way. We already have a team of 11, but
if you are available and inspired, you can certainly join us. The team has already raised $6,030, and I
have not yet finished hounding my contact list.
I feel incredibly grateful that I have benefited from the results of
modern medical research. 30 years ago,
it would have been 2 years and out. If
the CAR-T cell therapy works as advertised, I should end up with “no observable
disease”. Thank you Modern Medicine.
