Pat Killingsworth Pat Killingsworth

Reader comments and thoughts about overall survival data…

One of our readers, Ed from California,  has had trouble posting comments.  Sorry about that, Ed!

For some reason, Ed’s comments seem to get lost in the “world of moderation.”  I have yet to have one make it through to me for approval, even though he has tried several times.

This “approval thing” isn’t my idea.  First time comments are emailed to me for approval.  After that, future comments are allowed to post directly.

I’m not a fan of needing to approve anything.  But that’s the way the system works.

If you are ever having trouble posting comments, please email them to me and I will be glad to post them for you.  I welcome and encourage an open dialogue here and would never knowingly sensor or not include a reader’s thoughts because I don’t agree with them.

So sorry, Ed!  Here is your comment–and my response.  Better late than never…

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

Maybe this is just positive spinning, but we’ve been seeing those types of numbers now for many years. e.g.: average life expectancy 3-5 years; OS (overall survival data) from one therapeutic combo 40 months. 5 months for another. Never enough. We need to remember that these are AVERAGES. A deeper look into the dispersion of the numbers is needed. Are the ones to do not respond well bringing down the average for those who do? Are the numbers clustered closer to the middle or spread out considerably from bottom to top. And are age and other factors such as overall health and chromosomal abnormalities taken into account. Finally, and lets never forget this….MM is what I describe as a designer disease. It behaves differently in just about everyone…which is why it is so hard to pin down a global treatment. Not to be selfish about this…but until the magic bullet is discovered, we should all be less concerned with the mean OS and more concerned with our personal OS…

Ed-

You make some great points.  A patient views this type of data differently than a clinician or myeloma doc.  That’s what can make it so difficult for me to cover events like ASH.  I try to remain objective while wearing my reporter’s hat.  But even with experience, sometimes my emotions get the best of me–as they did at the IMF’s Foreign Journalist event–and my reporter’s hat flips-off and is instantly replaced by my patient’s hat.

The simple response to your comment is YES!  Yes, these are averages.  And yes, a younger, stronger patient is likely to outlive an older patient with co-morbidities.

And an especially big YES! to your point about being “less concerned with the mean OS and more concerned with our personal OS…

I don’t want to be the Christmas Eve “Grinch” here, but I do see one flaw in your logic.

I’m not sure you and many of my readers realize this, but clinical study results actually skew positive.

WHAT?

This means that patients who have serious pre-existing conditions like another cancer, heart disease or diabetes are excluded.  So are myeloma patients with kidney issues and/or advanced peripheral neuropathy.

The bottom line is this:  Clinical studies select the strongest and healthiest patients possible.

So one could argue that most OS results are actually better than those you would find in the real world. 

That said, I know from following your Ed’s Myeloma Blog site that you are a relatively young, strong newly diagnosed multiple myeloma patient.

With a little luck, most myeloma experts I speak with expect someone like you–who is just completing induction therapy and is responding well to Revlimid and/or Velcade–to live a decade or more.

And the emphasis should be on “MORE!“  With so many new therapies in the developmental pipeline, you hopefully have time to let researchers “work the kinks-out” a bit and identify which of these new drugs will work best for you down the line.

But for those of us who were diagnosed three, four or more years back, the clock is ticking faster…

What about older and high risk patients–or those with serious co-morbidity issues?  And what about depression and the challenges many cancer patients face–living day to day, feeling like you are waiting for the next shoe to drop?

Know what?  I need to table our discussion until next week.  These are very important topics which needs to be examined more closely.

But not today.  Today I am glad you are doing so well as you prepare for your first (and hopefully last!) stem cell transplant, Ed.

Today I am happy to share some quality time with my hard working wife who is rarely home.  Time to walk our “Island Dog, Finnegan,” and enjoy this beautiful, 80 degree Florida weather.

Try and have a wonderful holiday, everyone.  I will post a special Christmas letter to my readers tomorrow.  Feel good and keep smiling!