A Little Drama

Just a short update.  Or so we thought.  Friday, Jan. 5 I got a call from my oncologist, Dr. Levine, reporting that the Clinical Trial did not want anyone currently on Coumadin, which I have taken for many years.  I was instructed to stop the Coumadin and come into the clinic Monday to get a prescription for Lovanox, a different form of blood thinner. So Barbie (my chauffeur) and I went in to Beth Israel Monday for a 2:30 appointment.  Come 4:00, they still hadn’t called me, so we raised a ruckus.  Around 4:20 they led us back to an interview room.  The doctor finally arrived at 4:35, only after Barbie called our favorite nurse, MJ, onto the case. This was Dr. Nahas, Dr. Levine’s replacement, as Dr. Levine, most inconveniently, began a leave of absence that Friday, and so I will now be seeing a new doctor.

But the conversation we had was not just about Lovanox.  Instead Dr. Nahas started reviewing my entire case.  In fact she questioned whether I qualified for the clinical trial.  Was my Myeloma active and had all of my treatments turned out to be ineffective?  Whoa, what is going on here, was both Barbie’s and my strong reaction.  After all, I had stopped all treatments, relatively ineffective though they were, a month ago in order to purge my body of those chemicals, in preparation for the January 11 harvesting of my white blood cells!  Dr. Nahas went off to speak with the doctor in charge of the clinical trial, leaving us in a state of confused outrage.

The issue concerned the last drug combo I was on, Carfilzomib, Dexamethasone, and Pomalyst.  Was it deemed “effective” or not?  It was hard to tell because I only got 2 treatments.  The treatment did reduce the Free Lambda reading, but only slightly and it remained in the danger zone (over 800).  If you expect the Carfilzomib to be especially effective, then it was not doing its job.  Which is clearly what Dr. Levine had concluded, but the new doctor – or perhaps the person in charge of the trial with whom she was speaking on the phone --still had to be convinced.  Our recounting of considerably increased pain and reduced mobility since October did not suffice as evidence. So she ordered an X-Ray bone scan and an MRI.  By a miracle we were able to accomplish both that evening, though it meant Barbie sacrificing an important chorus rehearsal and my missing a Friends of Nigeria conference call.

We finally got home at 9:30 that night, exhausted.  I got a phone call that night at 10 from Dr. Nahas saying I had 2 new compression fractures in my lumbar spine and 1 new one in my thoracic spine, and these counted as evidence of active Multiple Myeloma. Hey, we could have told her I was falling apart without those tests.  At any rate, I was allowed to remain in the clinical trial, and I got a Lovanox prescription the next day.  So after staying in isolation for 2 days, I had my white blood cells extracted Thursday morning. That involved putting in a central line for extracting my blood and an IV to reintroduce my blood after the white blood cells had been extracted in a centrifuge machine. All went smoothly, and that afternoon/evening I got a dose of carfilzomib, etc. The next day, Friday Jan. 12 I got a second dose of carfilzomib late in the day so that we were in the thick of traffic getting off to Vermont for our granddaughter Emma’s birthday weekend.

At the moment, participation in the clinical trial is moving forward, which is positive.  On the negative side, this means I have a raging disease.  But if all goes well, maybe not for much longer.  Now I must stay healthy for the 3-4 weeks until the next step – the return of the weaponized T-cells!