Results!

Since the end of the CAR-T Cell clinical trial, I have had a variety of treatments and a variety of results.  First a batch of Cytoxan, which initially had a positive response, and then nothing.  Then Daratumumab + Velcade + Pomalyst.  While I was on the full dose, the results were positive.  But a severe rash cut the Pomalyst dose in half and low blood readings caused the Daratumumab to be skipped a couple of times.  The net result was that the multiple myeloma resumed its march.

Finally, I started a new treatment on Wednesday, April 17: Elotuzumab + Velcade + steroids.   Initially, my body felt as if it had had been slammed:  severe bone pain, much more restricted walking, severe cramps, frequent urination, extreme fatigue.  I spent most of 3 days napping, and then had no trouble sleeping at night.  Either I simply could not handle this combination of medicines or maybe something good was happening.  The first measurement of the results was a blood test taken the following Tuesday, though the were not available until that Thursday.  Here is a picture of the graph of Free Lambda, the key measure of my disease:

What had been a new high of 2604 is now reduced to 30% of that number, or 796.  To get results like that, I’ll take a body slam or two!  My reaction to a second treatment this week was much less severe.  In fact, I was thinking I was spared any pain for the first 24 hours, but then the impact hit.  My right ribcage feels as if someone kicked me with full impact.  If I sneeze, my whole chest suddenly erupts.  So ideally, more good things are happening in terms of disease reduction.

Googling “Elotuzumab mechanism of action” gives a number of links, including www.ncbi.nlm.nih.gov/pmc/articles/PMC5944582/.  There is a cell surface transmembrane molecule called SLAMF7 that Elotuzumab somehow targets, resulting in cell death of the myeloma cell.  I must have lots of SLAMF7 receptors which makes the Elotuzumab quite effective.  The course of treatment is 8 weeks of once-per-week treatments followed by treatments every 2 weeks.  Meanwhile I may or may not qualify to start the clinical trial of the vaccine treatment that my oncologist is heading up.  So, there are at least two irons in the fire to keep my disease at bay.

Meanwhile, we have had a Stannah stair chair installed.  This is a chair that goes up and down the stairs in the front of the house.  Ideally, I will not need to use it forever, but right now it is quicker to use the stair chair than to climb the stairs using crutches.  In effect it makes our living arrangement here into a single floor arrangement.  Unfortunately, those are the stairs our dog Otis uses to get to our bedroom, so having a chair halfway up initially threw Otis for a loop.  But Barbie did find a way for Otis to get by the chair, so he was able to join us last night, rather than whimpering at the bottom of the stairs.  He is a 94 pound yellow lab, so you can’t just pick him up and carry him around!

When your numbers are bouncing all around the place, it is difficult to know how you are supposed to feel.  In fact, I have felt pretty terrible, sleeping much of the days following the treatments.  But the positive direction of the free lambda has given me hope that had been missing while the disease was rampant.  Given how quickly the results can turn negative, it is difficult to put too much faith in the numbers, but for the moment, we have a definite schedule set up, which should make ordinary tasks of “living” more predictable and therefore a bit easier to manage.  Tuesdays in Lexington I will get an infusion of IV Fluids and they will take the blood for tests.  Then on Fridays in Boston I will receive the weekly treatment of Elotuzumab.  Ideally on Thursdays we will receive the results of the latest Free Lambda.  Ever lower, we hope.

All of this calls for lots of driving, with full exposure to Boston traffic.  I am no longer allowed to drive beyond the center of Stow, so Barbie is the usual chauffeur.  As treatments can be up to 5-6 hours and the IV infusions about two hours, not counting the commute, the disease is sucking up lots of time, as well as my well-being.  Barbie is still teaching, doing the chorus and trying to play some tennis, as well as pick up the slack for all the household duties I cannot do, as my movements are restricted to those things I accomplish with limited energy and using crutches or a walker.  Neither of us ever imagined we would be in this situation.

Sunday, April 28 marks the annual MMRF (Multiple Myeloma Research Foundation) 5-K race, which many of you have supported in the past.  In many ways, this event acts as a marker for the progression of the disease.  I ran the course in 2013, 14, 15, 16, and 17, winning a first each year in the “survivor” category.  (Very few “survivors” are able to run, so this is a testament to the destructive nature of the disease, not any particular swiftness on my part.)  Barbie also was a winner in the women’s category, ages 70 to….94!  Wow.  Last year I could not run, but pushed my youngest grandson, using his stroller as a walker.  This year, I will participate, but with a team pushing me in a wheel chair.  The weather promises to be cold, windy and possibly rainy, so the pushers will get some extra exercise.  Thanks to all of you who have supported this important organization in the past.  I am living proof that the research they are doing does make it possible to extend life.  As a participant in several trials and the beneficiary of many new medications, I am grateful for the ongoing work of the MMRF.