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Bruce Story

Patient Stories


Aplastic Central MDS Patient
Conference Trip Report- WIP

Sue (my wife), Melissa (my daughter) and I attended the
AA/MDS International Foundation Patient Conference in St. Louis from
Friday July 27 to Sunday July 29.  Here is a "trip
report" on our experience. There were
approximately 250 people in attendance including AA/MDS/PNH patients and
their families.  We met lots of people and had the opportunity to
listen to many well informed medical professionals who provided good
information on the current state of the art.  

Friday – July 27

Friday was a bit of a disappointment.  A scheduled session for reviewing
"Research the Internet" was overflowing
and we were unable to even get in the room.  Did not appear to be of
much use to us since we are professional surfers, but I assume others may
have learned a few things.

In the next session
for patients we were told not to discuss our personal stories by a 30
something who added very little value.  We were to discuss our "coping
strategies".  Most everyone in the group seemed to be coping well and
we could have used the hour much more constructively.  I will be
sending my suggestions to Marilyn who seemed anxious to hear my thoughts
when I expressed disappointment in Friday.   

The concept was to
split AA and MDS into two separate groups, spouses to another and 
family members to another.  Feedback on all sessions was not very
good.  We then got back together with family members and had a free
for all that also seemed of little or no value.  There needed to be
more structure for people who did not know what to expect, did not know
each other and were wondering what was going on.  

The evening brought a rather disorganized dinner of pressed turkey that
was inedible preceded by two excellent speaker and one marginal speaker.  We
really enjoyed a talk by Dr. David Biro who is an MD who also suffered
from AA/PNH.  His talk was inspiring as he described how he beat the
illness with a matched sibling donor BMT.  He authored a book called
One Hundred Days which I highly recommend (See
. In a down to earth, factual, often frightening and humorous
manner, Dr. Biro describes the hell he went through during full body
irradiation in which they kill all your bone marrow and completely wipe
out your immune system.  David’s talk salvaged an otherwise marginal

Saturday – July 28

Completely turned around from Saturday.  The speakers were all
MD’s and they provided great insight on their chosen topics.  There
was always adequate time for Q&A and the questions were almost always
high quality and answered very well.  They split one big room into
two smaller ones and ran two concurrent sessions – one for AA and one for
MDS.  Except for one exception, Sue, Melissa and I attended all AA
sessions.  We unfortunately missed most of the 8:15 session on Iron
Overload Management but managed to pick up the gist of the talk from
Q&A.  Dr. Eric Nisbet-Brown of Dana Farber discussed the protocol
for iron chelation (reducing the amount of iron in your system after
multiple red blood cell transfusions).  The drug of choice is
desferol.  To quote Dr. Nisbet-Brown, "chronic red blood cell
transfuions lead to accumulation of excess iron in various tissues of the
bodyu, including the liver, the heart and the pituitary, because the body
lacks mechanisms for effectively secreting iron. Iron deposited … in
organs may cause significant harm.  At present, the only
iron-chelating drug licensed in North America is deferoxamine (Desferal)
whichi is generally given as a slo subcutaneous infusion using a portable
infusion pump…Orally-active iron chelators remain an area of active
research, but none has yet been licensed in North America.

Our next session was presented by Dr. Lucio Luzzatto, the world expert
on PNH – Paroxysmal nocturnal hemoglobinuria (PNH).  His topic was
"Non-Transplant Treatments for AA" He confirmed ATG/ALG plus
Cyclosporine as the recommended first line treatment for AA patients who
do not have a sibling matched donor.  There was not really anything
new discussed as this protocol has been around for quite awhile.  It
was my first exposure to PNH which is a rare and strange disorder linked
to AA.  Patients with PNH have the added risk/benefit of premature
clotting or venous thrombosis (abnormal clotting) in addition to
thrombochytopenia (low platelets) and neutorpenia (low white cell counts).

The next speaker was Richard Champlin of M.D. Anderson Cancer Center in
Texas.  He discussed "Recent Advances in Therapy for AA".
He began by stating that Bone Marrow is "the largest organ in the
body" and explained the function of bone marrow and each of the blood
cells.  He described the stem gell generation process and then got
into the details of the disease.   He mentioned ATG/Cyclosporine
and Colony Stimulating Factors including G-CSF which stiulates granulocyte
production, erythroprotein to stimulate red cells, and interleukin-11 for
platelets.  (Note – I am currently receiving all of the above and
have not responded to anything after over seven months).  He went on
to discuss the current strategies for transplants.  He stated that
"Since GVHD (Graft vs Host Disease) is the major cause of morbidity
and mortality, transplantation of bone marrow should be preferred over
blood stem cells. Graft rejection is a major concern with BMT." 
Intensification of the preparative regimen has reduced GVHD but increases
the risk of mortality from other other causes.  i.e. cancer, liver
problems, infections, etc.  The latest strategy is to include a drug
called fludarabine which in some cases has provided a less toxic
enrironment.  (My translpant strategy would include fludarabine). 
I loved the closing on his speaker abstract and I quote:  " For
patients without a matched sibling or older patients (age>50 years),
immunomodulatory treatment with ATG/cyclosporine should be
administered"  Leaving me with the obvious conclusion that since
I am over 50 (now considered old!) and have not responded to ATG that I am
in a world of trouble!

I skipped the session on Pediatric Treatments for AA but have the
abstract if anyone is interested.  Send me an email and I’ll
transcribe it for you.  

The absolute best part of the whole session came next – Wide open
Q&A with a doctor panel – Four of five docs responding to questions
from the patients and families.  The answers were precise, thoughtful
and when they didn’t know they admitted it and did their best to formulate
a meaningful response.  Some that I remember:

Q. I have been in remission for nearly two years, my platelet count is
low (20,000) but everything else is normal and I am transfusion
independent.  What, it anything should I be doing?

A. Avoid sharp objects.  Otherwise you are fine and in good shape.

Q. – Many questions on PNH during which I tuned out.  As far as I
know, I don’t have it and can’t deal with anymore bad news right now –
thank you very much.

Q. What are ramifications/side effects of cyclosporine?

A. Potential kidney damage – Be sure to stay well hydrated.  High
blood pressure – Monitor – medication available. Lowered magnesium level –
take supplemental magnesium with guidance from caretaker.

  More to come when I get time………



Respectfully submitted.

Bruce Lande



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Since my Last transfusion  

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