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Reflections from an emotional Saturday at ASH.

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I was excited to learn that the IMF had selected me to represent them as a patient blogger at this year's American Society of Hematology (ASH) annual meeting in San Diego.

I have covered a number of ASH and ASCO (American Society of Clinical Oncology) meetings in the past.  By far the least glamorous, yet very important component of the five day event are the poster sessions.

Poster sessions are open daily for peer and media review.  Each day, as many as 1000 large posters are mounted on flat bulletin board style backdrops in a large hall which looks a lot like an airplane hanger.

The posters are grouped by category.  For example, Saturday there was a row filled with nothing but stem cell transplant related research results the length of a football field.

Think that's a lot?  There were three rows of multiple myeloma related posters.  That's almost 100 research study posters! 

Years of hard work, all summarized on a 3 ft X 5 ft poster. They may not represent the most dramatic advances in hematological research--those are saved for oral presentations in the afternoon and evening sessions.

But the research displayed in the poster exhibit hall are the heart and soul of ASH.  There are lots of diamonds in the rough here.  You just have to know where to look and what to look for.

That was my job Saturday; to carefully work my way through the rows of posters, looking for study results which might impact my fellow patients.

Keeping this in mind, I usually look for data on new and promising emerging myeloma therapies.  These can be hard to find, since the majority of posters aren't about clinical trials.  Instead, they reflect very specific, genetic related studies with tiles like "Gene mutations detected by whole-exome sequencing," or "Prognostic significance of focal lesions in whole body MRIs."

But every fifth or sixth poster usually reflects therapy results, and Saturday was no exception.

At first I was a bit disappointed.  Nothing was jumping out at me--just a bunch of highly technical study results which didn't seem like they would be relevant to patients.

But soon I noticed several posters that I considered significant.  Then I found another and another...

There were indeed some significant therapy-related study results here.  But I found myself losing focus. 

You see, after over four years on Revlimid, this summer I underwent an autologous stem cell transplant.

The results of my transplant were disappointing.  Not only hadn't it slowed my multiple myeloma down, but it had made things worse!  My doctors were concerned--and so was I.

What if Revlimid and/or Velcade had stopped working for me as well?  What would I do then?

Long suffering multiple myeloma patients face this reality every day.  Once standard anti-myeloma therapies stop working, the next step is what oncologists called salvage therapy.

Salvage therapy is a catch-all term used to describe the mad scramble as your myeloma docs try and come-up with a drug or drug combination that can keep a strengthening, angry myeloma at bay.

Fortunately, it looks like a combination of Revlimid, Velcade and dexamethasone (RVD) is going to work for me a while longer.

But this experience profoundly changed how I view the world of multiple myeloma therapy.  We need new drugs which enhance the way Revlimid and/or Velcade works--or can stand alone when they are no longer effective--and we need them NOW!

As I strolled up and down the rows of posters Saturday,  I found myself drawn to posters about new therapies for relapsed myeloma patients like me.

I was therapy shopping!

I was walking up and down the rows, looking for therapy options like I was shopping at Target or Kohls.

What a strange, surreal experience! 

OK.  That's the poignant, emotional side of Saturday's assignment.  Hopefully I have set the stage for you so you can understand my frame of reference here at ASH.

But what did I find?  Did I locate any diamonds in the rough which might give relapsed multiple myeloma patients hope?

YES!  Yes I did.

I will share my impressions and some specifics I found in my next blog post.  Until then, let me say I was very encouraged by what I saw Saturday.

Until next time, Feel good and keep smiling!  Pat

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This page contains a single entry by Pat Killingsworth published on December 11, 2011 11:41 AM.

I am finding some salvage therapy options here at ASH... is the next entry in this blog.

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