At the beginning of February, 2017 Teresa and I made our way
to Salt Lake City for the fourth annual meeting of the Cholangiocarcinoma
Foundation. (And we combined it with a trip to the Grand Canyon and to see
relatives in Phoenix!)
The Foundation is an act of love. It was created by the
survivors of a patient who died of cholangiocarcinoma, and a great deal of the
organizing of the conference and of the Foundation’s activities seems to be
done by those relatives and by other volunteers. It has done something that’s
apparently about as rare in medicine as in other fields of human endeavor: it’s
brought together people who might otherwise be competing with each other –
doctors from different institutions with different perspectives on this disease
and its treatment – and people who might otherwise be ignoring each other as
much as possible – doctors and their patients – in a truly collegial gathering.
We met some people I’d only seen on the cholangiocarcinoma
warriors facebook group – people who’ve had this disease for many years and are
still fighting it hard. Several of these people told their stories in short
sessions scattered through the conference. They were all the more inspirational
because they weren’t simply happy stories. One of the speakers learned after
the conference that she must have additional surgery. Another, a woman who
seemed particularly well dressed for her presentation, had been in the emergency
room just a few weeks before the conference took place.
We also met some scientists, including a very nice group of
people from the University of Nebraska with whom we had lunch. They were interested in cell death. So
am I, particularly in cancer cell death. It’s often said that cancer cells have
escaped the various bodily controls that make ordinary cells die on schedule,
but these folks said that cancer cells really want to die – they’re just
blocked in various ways from doing so. I hope they’re right and that they can
find ways to free cancer cells from their burdensome existence!
And we heard several presentations of pretty hard science.
Hard, among other things, in the sense that it wasn’t easy to follow –
especially if you, um, dozed off during some of what was said. (But for those
of us in that category, the videos of the sessions are in the process of
getting posted on the Foundation's page on Facebook.) It was clear that sophisticated work is being done
in tracing the pathways of various processes of cell functioning. Pretty much
anything that cells do is a potential weapon for cancer cells, but also a
potential target for attacking them: how they get nutrition, how they avoid
death, how they migrate from place to place in the body. So it was exciting to
hear about the work that is underway.
And also a bit chastening, in various ways. There was the
scientist who showed pictures of an autopsied liver, and commented that
although scans of this patient had shown only discrete tumors, in fact on
post-mortem examination it turned out that the whole liver was pervaded by
cancer. Perhaps more important, even though there was obviously good work being
done by good people, there weren’t a lot of these good people – all of us,
patients, caregivers, and scientists, fitted in one mid-size hall – and there
seem to be many disparate topics needing examination. The Foundation has
generated resources and made grants, and more important sponsored a scientific
community, but much more needs to be done.
Still, much is being done. The treatment I’m now getting,
which is based partly on an effort to target a new mutation that has appeared
in my latest tumor, is the kind of approach that has only emerged in recent
years. My oncologist is part of developing this approach – and we talked with
her at the conference. And meanwhile the efforts of the volunteers were truly
heartwarming.
No comments:
Post a Comment