In my last blog I attempted to describe what it's like to cover an important
conference like ASH as a patient.
I used my experience at Saturday's poster session to set the stage for some
important news from the San Diego Convention Center.
So let's get back to my research poster experience that I started to share with
As I walked up and down the rows--flanked by posters of different colors and
sizes on both sides--I found my mind wondering back to my recent "close call"
following my stem cell transplant this summer.
Even though it looks like my RVD (Revlimid/Velcade/dex) therapy is working
post-transplant, I can't shake that "close call" experience of realizing I
might be running out of treatment options.
What was I looking for? New therapy ideas for patients (like me!) who are
facing difficult salvage therapy decisions in the near future.
Mmm. Here's a poster with Phase 2 study results which combines a
traditional leukemia and lymphoma drug, bendamustine, with Velcade. I
wonder if bendamustine, might be the answer?
I have a friend who has run out of therapy options. As a last ditch
effort, his Mayo Clinic oncologist started him on bendamustine--and it seems to
be working so far.
Here's another poster with research data about Cytoxan, another alkaloid class
"blast from the past." I think Cytoxan has been around longer than
I have another myeloma patient friend who is doing wonderfully on nothing but
Cytoxan and prednisone. It has worked for him for over a year.
Of course, there are some new novel therapy agent options represented on
posters here as well, like carfilzomib, pomalidomide and elotuzumab.
Now if these hard working researchers and clinicians can get the FDA to approve
some of this stuff, a lot of my fellow patients will benefit.
As a post script, I would like to note one advantage of studying older,
established drugs like Cytoxan and bendamustine: They can be prescribed "off label" for use almost immediately outside a clinical trial setting.
Time to have fun, kick-back and read some of these study results...
Until next time, feel good and keep smiling!
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
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
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
Until next time, Feel good and keep smiling! Pat