Monday, April 13, 2015

New Regimen

After seven years my myeloma has finally made an end run around my dear friend Pomalyst and found a way to hurt me.  The previous post shows the PET scan of the hot little lesion that threatens to hurt my spine.  Pomalyst is still working, you might say, because the blood markers IgG and M-Spike continue to be stable.  Nevertheless the T5 lesion appeared, so something must change soon, and I am enrolling in a study of a new drug.

Enrollment in the study is tomorrow, Tuesday, with a battery of appointments:
  1. Urine test
  2. Doctor visit
  3. Bone marrow biopsy
  4. Electrocardiogram
  5. Chest X-Ray
  6. Blood draw for who knows what
  7. Skeletal bone survey
  8. Second doctor visit
  9. 30-minute study (don't know what this is - maybe the pill pickup?)
This basically takes all day, but I'm very happy that they made it all fit into one day because it's nearly a 2-hour drive for us each way.

I consider myself an exceedingly lucky myelomiac, because once again the myeloma menace was discovered before it really hurt me.  There was no way to find this nasty little hot spot except a PET scan, and those are not performed routinely.  Had the scan not been done, most likely I would eventually have broken that vertebra, requiring surgery and possibly resulting in serious permanent injury.  Lucky.
Patient advocacy did play a part in the luck, though.  For seven years, on the anniversary of my start in the Pomalyst trial, I have requested some sort of check on the bones, be it an X-Ray survey, a DEXA scan, or a PET scan.  This year the PET seemed appropriate because of a minor pain in the lower back.  Nothing was found down there, but the T5 lesion up by the heart changed everything.

A fond farewall to Pomalyst, which has protected me through 60 marathons, including one in each of 47 states.  We were hoping to get to 50 states on Pomalyst this year, needing only Wisconsin, Illinois, and Nevada, but that will have to wait.  Anyway 47 isn't bad.  Perhaps we'll see Pomalyst again some time, probably in combination with something equally effective.  Meanwhile we keep running.


  1. That is impressive that pomalyst has worked for so long. It's interesting that you asked for the pet scan and the T5 showed up with a problem. Very impressive you followed your intuition.
    I think 47 marathons is an amazing amount considering I walk 1.5 miles a day and that's a stretch.
    The new drug sounds very promising and that's an oral drug is excellent.
    I'm about to change from revlimid to Pomalyst. The revlimid is still keeping my mprotein down nicely, but my kappa light chains are going up. After following it for 4 months, my doctor and I decided to switch. I've been on revlimid 5 years so I'm hoping pomalyst does work too.
    Best to you in this study and you are an inspiration!!!!

    1. Guess what - my light chains (Lambda in my case) have been going up slowly over the past two years, even though m-protein has been stable. Also, two years ago a PET scan showed NO lesions. Could the light chains be a subtle marker for the new lesion?

      Methinks you are following your intuition (and your doctor's) as well! I hope Pomalyst works as well for you as it has for me.