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Data presented at the IMF’s Journalist Workshop takes me on an emotional roller-coaster ride (Part Two)

Home/About Pat, Research, Supplements/Drugs, Therapy/Data presented at the IMF’s Journalist Workshop takes me on an emotional roller-coaster ride (Part Two)

Data presented at the IMF’s Journalist Workshop takes me on an emotional roller-coaster ride (Part Two)

I left off yesterday, talking about how a promising Revlimid maintenance clinical trial that was otherwise tarnished by a lack of improvement in overall survival (OS) among patients in the study.

I forgot to mention that Dr. Richardson chimed-in, supporting Revlimid maintenance.

“A similar study using thal/dex in the U.S. did show a measurable survival benefit.” Dr. Richardson reported.

Why?  He reasoned that patients have been followed longer, allowing OS to accrue–my word, not his by the way.

Dr. Richardson then stood behind the podium and aimed his laser pointer at a slide which showed how patients using the ideal (so far) daily dose of 4mg of pomalidomide–administered three weeks on and one week off–worked in 34% of patients who had become refractory to Revlimid and/or Velcade.

OK.  That’s not bad.  But what really got my attention was this:  The 34% used pom and low dose dex.  Without the dex, only 13% responded.
ONLY 13%!

The moral to this story might be that, as much as patients like you and me hate to take dex, it’s an important component in most anti-myeloma therapies.
SHOOT!  (Not what I really wanted to say!)  That got my attention big-time.  Guess I’m stuck using dex for a while…

Back to the study/story.  Here’s where the “emotional roller coaster” part of the story kicks-in.

So far, nothing earth shattering here.  Optimistic myeloma docs–GOOD.  Stuck using dex, probably for the rest of my life–BAD.

I consider myself to be an experienced patient reporter at this point, so none of this is no big deal.  But what I heard next was a very big deal for me…

Apparently, patients who used pom/dex only had a progression free survival (PFS) benefit of an average 4.7 months.

What?  That’s a bit disappointing for a new myeloma wonder drug, isn’t it?  I don’t care of pre-treated and refractory the subject patients were!

But what I heard next left me stunned.  Once again, there it was:  Dr. Richardson’s data supported what Dr. Orlowski said at Friday night’s IMF symposium.  The average life expectancy of a heavily pre-treated patient who had become refractory to both Revlimid and Velcade is only 9 months.

Worse, using pom/dex only added 8 months to this number–9 months without pomalidomide and 16.9 months with pom/dex.

WHAT?  I had a sinking feeling, like I had just been hit in the gut and had the wind knocked-out of me!

Using this “exciting”new novel therapy agent that had all of the experts so excited–that we in the myeloma patient community had been hearing about and following hopefully for years–was only going to add 8 months to my life, if and when my RVD therapy stopped working?

8 months.  Those are the type of numbers you hear at ASCO when researchers are dealing with difficult to treat solid tumor cancers like pancreatic and small cell lung.


A few moments later when Dr. Durie asked for questions, I almost stood up and shared my feelings.

“I understand why a hematologist might be encouraged by the results of this study, Dr. Richardson.” I would have said.  “But from a patients perspective who is close to needing an option other than Revlimid and/or Velcade, I have to tell you this news is upsetting…”

How do you–my readers–feel about this?

I should pause here and pump everyone back up before I feel a collective shoulder slumping among my patient and caregiver friends and readers.
Sure, this is just one study.  And yes, in oncology/hematology terms, these results are significant.


So does Cindy Ralston, a fellow patient who was also working with the IMF this week and attended the event.

But another well known patient blogger who was there, Jack Aiello, was not nearly as discouraged.  Fair enough.  But he did admit that his myeloma is stable and he is drug-free at the moment.  I think that gives us diametrically opposed views of the same data.  I feel vulnerable and am probably too close to this issue.

But if my cancer was stable, I might agree with Jack.

I know, I know.  You can spin it either way.  8 months added to a median life expectancy of four or five years is–by drug development standards–impressive.  That’s a 10-15% improvement.

But let me ask you, my readers:  Don’t you want more?

I’m going to stop here.  Tomorrow, I will examine the results from several carfilzomib studies which excited Dr. Orlowski from this year’s ASH.

And to end on a more positive note, Dr. Orlowski did discuss at length how combining these two–and possibly other, existing drugs–might yield a much greater survival benefit.

Tune-in tomorrow to share my roller coaster ride back up!

Feel good and keep smiling!  Pat