Seven Great Years

I started on a trial of Pomalyst seven years ago, 92 cycles ago, starting with CC-4047 (now Pomalyst) and dexamethasone (DEX) but most of the time taking 2 mg of Pomalyst daily as a single agent.  It’s still keeping the M-Spike down to 1.1, but a PET scan on Tuesday revealed a small but bright (very active) myeloma lesion in the T5 vertebra.  This means that the current regimen is no longer working, my spine is at risk, and something has to change.

Copyright (c) 2015 Mayo Clinic

The image shows a cross-section of my body laying on my back, the view slicing through both arms and the chest, including the lungs (black) and with the T5 vertebra at the bottom.  The brightest spot is the myeloma, just above the spinal cord in the vertebra.

This image is copyrighted 2015 – no one has permission to display it online or anywhere else.

Dr L called this evening and we had a wonderful conversation.  Some points:

  • This may mean that the myeloma has mutated in that location, or that a pre-existing clone, resistant to Pomalyst, has finally raised its ugly head there.
  • Either way, this lesion has to be treated, both to protect the spine and to keep the new clone from taking over.
  • There is no way to know how fast the lesion is growing, so sooner is better than later.
  • The lesion is not accessible by needle (for a biopsy or for treatment), because the lungs and aorta are in the way from the front and side, and the spinal nerve bundle and bone prevent access from the back.
  • Dr L didn’t think it was a good target for radiation therapy, feeling that a systemic treatment should be tried first.
  • This lesion probably cannot be seen by x-ray.  The hole in the bone might be seen by CT-scan, but that wouldn’t show whether the myeloma was still active, so the only way to confirm a successful treatment will be another PET scan showing that the sugar-sucking bright spot is gone.

Here are three interesting treatment possibilities:

  • The study started with Pomalyst and dexamethasone, so why not just add DEX back to the regimen?  This would be the most conservative approach, but I’m not enthusiastic about it because I think the bright little lesion needs more aggressive treatment.  I really really want to stomp it out.  Really.
  • How about adding a few cycles of Kyprolis to the Pomalyst (with DEX), and then going back to Pomalyst maintenance if that regimen succeeds?  This approach might work, as Kyprolis and Pomalyst are a very potent combination.
  • There is a study of Ixazomib (MLN9708) with DEX at Mayo Clinic.  Ixazomib is a new oral proteasome inhibitor which appears to be very active against myeloma with few side effects.  The study regimen includes DEX, but not Pomalyst.  Mayo is checking to see if I am eligible.

There are other choices, of course, several others.  We exclaimed about the abundance of therapies available now, compared with those available 12 years ago when I was diagnosed.  Even thalidomide was then available only in a trial, and there was no Pomalyst, Revlimid, Velcade, Kyprolis, or (several others).

How to choose?  My personal goal is to stay alive and competent for as long as I can benefit my wife and daughter.  I believe that’s my purpose here on earth, so all medical decisions are made with the advice of a great doctor and with that goal in mind.