An Emotional Rollercoaster

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 29^th.  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.