Unchartered Territory

First some good news.  My left hip is pretty well healed.  I met with the surgeon on Tuesday, and he says it is looking good.  I commented that the outside of my hip hurts when I lie on my left side.  Dr. Wixted pulled up an X-ray of my hip, and showed how there is a metal fixture holding the screw that extends into the head of the femur.  The screw’s job is to stabilize the head and pull the broken parts together.  As the bone heals, the length of the neck gets shorter.  The metal fixture is anchored in a metal brace that goes the vertical length of the femur.  The fixture must have some sort of ratchet mechanism, because as the neck gets shorter, the fixture backs out of the brace.  There is now about a half inch of the fixture sticking out of the outside of the brace.  That is what I am feeling.  They can replace the fixture with a shorter one, but they would not do anything until a year out.

I also commented that the left hip joint does not flex as far as the right one.  Dr. Wixted said that was also due to the shortening of the neck of the femur.  The head of the femur is the ball of a ball-and-socket joint.  The shoulder of the femur gets closer to the head as the neck shortens.  When I try to bend the hip fully, the shoulder of the femur bumps into the hip bone, limiting the range of motion.  I should still do stretching exercises to maximize the range of motion, but I should not expect to achieve the pre-surgery range.

It is now 4+ months since I broke the hip and had the surgery.  Things are going well.

I wish I could say the same on the multiple myeloma front.  At the end of May, I entered a clinical trial for a multiple myeloma vaccine.  Unfortunately, the vaccine has not worked for me.  For unknown reasons, they did not test for free lambda during the month of August.  When I had the 5^th round of bi-weekly vaccine treatments on September 3^rd, my free lambda was 1,952, an alarmingly high value, up from 716 on July 23rd   They had me come in again to retest it, which confirmed that the reading was accurate.  So on 9/10 they put me back on the treatment that proved to be effective in the spring, a combination of Elotuzumab and Velcade.  Although this combination reduced the free lambda number quickly, they suspended these drugs when I fell and broke my hip. Then they tried the vaccine – which hasn’t worked.

Prior to Tuesday’s Elotuzumab/Velcade treatment, they took another reading of free lambda, and we are at a new high – unchartered territory.  Here is a graph of recent values:

The prior high was 2,604 on April 11.  At 2,752 we have a new record!  This is more than 100 times the max of the normal range.  I am sure hoping the Elotuzumab does its magic again.  The concern is that multiple myeloma is pretty good at evolving around treatments.  When I was on the clinical trial for CAR-T cells, I got an inadequate dose to start.  Then later they gave me what was then understood to be the recommended dose.  But my multiple myeloma simply shrugged off the fuller dose, and proceeded to assert itself.  We sure hope a similar pattern does not appear here.

During the spring when my free lambda was high, I was pretty sick and spent several sessions in the hospital.  The good news is that I am feeling relatively well, in spite of the numbers.  I am bent over more than before, but I don’t think that is the result of any new compression fractures.  I have progressed from favoring my hip.  Now when I try to do chores without any external form of support, my back gets tired very quickly.  Once it gets really tired, it hurts.  So when I go for a walk, I use my rollator.  And I limit the time I do unsupported activities.  Even standing around socializing gets tiring, and I find myself seeking out a chair (which tends to limit social interaction).

A big question is whether we will be able to go on a trip Barbie has planned to Prince Edward Island.  The idea is to leave on Wednesday, 9/18, and return Sunday, 9/29.  That was timed to correspond to the gap between the 6^th and 7^th bi-weekly applications of the vaccine clinical trial.  Now I am on a completely different treatment plan, and the trip may or may not interfere with the treatment.  The documentation they had me give the nurse on Tuesday called for a second treatment on 9/24, which would be right in the middle of our trip.  I just spoke with the research nurse, and she said the normal course of Elotuzumab treatments is weekly to start, and then bi-weekly.  Because I had gotten Elotuzumab back in the spring, the idea was to jump right to the biweekly treatments.  But the distressingly high free lambda will probably indicate a weekly treatment on 9/17, and then a 2-week interval.  The doctors are aware of our travel plans, and they have said they will plan around them.  But medical events have a way of taking precedence over the best laid plans.