Marian E. Sarmento born in Toledo,
Ohio in 1933 and currently living in
Holland, Ohio, a suburb of Toledo, with her husband Harold
L. Sarmento (Hal).
Marian graduated from The University of Toledo in Education
and taught high
school business subjects prior to raising a family of five children.
She married Hal in 1983. Hal has three children and together
they enjoy twelve grandchildren.Marian successfully recovered from
ovarian cancer and a hysterectomy in June 1996. Six
chemotherapy treatments followed at three week intervals. Loss
of appetite and hair resulted but no severe side effects. In August
1997 she began to lose her equilibrium. Over the next four
months her fine motor skills deteriorated so that she could no
longer write, knit or crochet. She was dizzy and seeing
double. Her arms (more pronounced on the left side initially)
developed a tremor and shook frequently. Her head also shook
from side to side. The ataxia has continued. She lost
control of her legs so that she could no longer walk or support
herself and is confined to bed or a wheelchair. During this time,
her doctors (GP, Oncologist-Gynecologist, Neurologist) performed
many tests including cat scans, blood, MRI and lumbar puncture
resulting in a diagnosis of paraneoplastic cerebellar degeneration.
Her cancer markers (CA 125) increased during this period and six
additional chemotherapy treatments were ordered. The cancer
makers decreased to teens
with this treatment. In December 1998, her speech deteriorated
severely. After seven speech therapy sessions, a slight
improvement has been made but it is still
difficult for her to speak and be understood. Currently, Marian
spends her days in a hospital bed getting up to eat and to go to the
bathroom. She need to be fed and while she eats solid food, it
is difficult for her to chew and to swallow. She does not seem
to have any pain
and is otherwise comfortable except for the vision and ataxia.
She is in surprisingly good spirits for her condition and is loved
dearly by Hal and the rest of the family. The other members of
IPA are a tremendous source of support, love and comfort.
<html>
<head>
<title>
Our Members</title>
<meta name=
"GENERATOR"
content="Microsoft
FrontPage 4.0">
<meta name=
"Microsoft
Theme" content="capsules
011, default">
<meta name=
"Microsoft
Border" content="t,
default">
</head>
<body><div align=
center><table
border=0
cellpadding=0
cellspacing=0><tr><td><script><!--
var g=new Date(); g=g.getTime()%1000;
document.writeln('<iframe width=468 height=60 scrolling=no
marginwidth=0 marginheight=0 frameborder=0 src=/cgi-bin/b/468/60/dXNlcmJhbm5lcg==/is/'+g+'/></iframe>');
//-->
</script><noscript><iframe
width=468
height=60
scrolling=no
marginwidth=0
marginheight=0
frameborder=0
src="file:///C:/My
Documents/My Webs/dreport4/cgi-bin/b/468/60/dXNlcmJhbm5lcg==/in/325/"></iframe></noscript>
<tr><td><!--webbot
bot="Navigation" S-Type="children"
S-Orientation="horizontal"
S-Rendering="graphics" B-Include-Home="TRUE"
B-Include-Up="FALSE" U-Page
S-Target -->
</td></tr></table></div>
<p align=
"left">We
have members from all over the United States and in several other
countries. Biographical information on them will be posted as it
becomes available.
</p>
<ul>
<li><p align="left"><strong>Martin
R. Burke (Marty)</strong>
and <strong>Diana
Gallagher
Burke
</strong>
(note: no hyphen!). We live in Minnesota, and moved here from
Kansas.
Pictures are on The Links page. Here are brief descriptions.I am
a writer, an astrologer,
a Catholic Christian a mystic, and an Ataxic--which is to say, I
have Cerebellar
damage--of the Paraneoplastic variety! You can write to me in
French and German, as well
as English, and I will understand you. Diana (the Famous One) is
the author of some 29
books, and has won a HUGO for her art. Find out more about the
Burke's at:
<a href="http://209.185.131.251/cgi-bin/linkrd?http://www.netcom.com/~mrburke/"
target="_blank">http://www.netcom.com/~mrburke/</a></p>
</li>
<li><p align="left"><strong>Linda
Doyle</strong>
was hospitalized for almost
three years as a result of Paraneoplastic disorders resulting
from breast cancer. Until
several weeks before the onset of the illness she worked in an
Ottawa law firm. She
was a
graduate of the Universite de Montreal in law and had an interest
in theatre and
literature.
<b>Linda
died on September 6, 1999 from complications following
a stroke.
</b>
She leaves her husband <strong>Patrick,</strong>
a writer and television
producer, and one son, Liam,
aged 15. Originally from Montreal, the family now lives on a farm
some 65 km west of
Ottawa.
</p>
</li>
<li><p align="left"><strong>Carolyn
Lawrence</strong>
(<a href="mailto:CZLAW@aol.com">CZLAW@aol.com</a>)
is one of the founding members of the International
Paraneoplastic Association and
paraneoplastic support email list. She is a magazine
writer living in Southern
California. In 1996, her mother,
<strong>Ellen
Ziek</strong>,
was diagnosed with
paraneoplastic cerebrellar degeneration related to cancer of
undiagnosed origin. Although told at the time that she
only had a few months to live, Ellen's courage and determination
helped her battle both
the cancer and pcd for three years.
<b>
Ellen died on July 18, 1999 from complications related
to the cancer.
</b>
Finding it hard to find information and resources on paraneoplastic
disorders, Carolyn launched an email support group for
paraneoplastic patients and
caregivers in 1997. The support and information shared by members
of the email group made
an enormous difference in Ellen and Carolyn's life and Carolyn
hopes to do the same for others facing this battle.
Carolyn is always
willing to share with other caregivers and patients ---
from treatment options to
the day-to-day frustrations of dealing with paraneoplastic
disorders, please feel free to contact her.
<br>
<br>
</p>
</li>
<li><p align="left"><strong>Lisa
Korenko's</strong>
3 year old daughter, <strong>Justina</strong>,
suffers from OMS with neuroblastoma. She first became sick in
November of 1996 and was not
properly diagnosed till March of 1997 at Childrens Hospital Los
Angeles. She has been
treated with ACTH, prednisone, IVIG and has just completed a
course of Cytoxan and
plasmapheresis. All treatment except for prednisone has been
stopped in December 1998. We
are hoping that her immune system has been altered to not have
the symptons return.
Currently, her only defecit is tremors with fine motor skills and
is severly speech
delayed. Her gross motor has returned without any noticable
ataxia. We live on the Central
Coast of California and currently being treated at Santa Barbara
Cottage Hospital.Our
page:
<a href="http://209.185.131.251/cgi-bin/linkrd?http://hometown.aol.com/LJKorenko/index.html"
target="_blank">http://hometown.aol.com/LJKorenko/index.html</a>
(Read a newspaper article
about Justina at the
<a
href="Littlest%20Battler.htm">Littlest
Battler</a>
page, a page
devoted exclusively to our youngest member.)
<br>
</p>
</li>
<li><p align="left">My
name is <strong>Norm
Tooley</strong>.
<a href="mailto:(ntooley@benzie.com">(ntooley@benzie.com</a>)
After being ill for several
monthes,having almost every medical test known to man,losing over
40 pounds with still no
diagnosis, I was referred to Mayo Clinic.The average stay at is
three days;I was there
twenty days.I had no feeling{other than some tingling} from the
rib cage down, almost
continual hiccups,and very little sense of balance.The first week
at Mayo I was diagnosed
with small cell lung cancer and told the tumor would fit on the
head of a pin.That is why
no-one else had found it. I was also told an MRI had shown a
swelling at the back of the
brain which was another possible tumor and this was very
serious,but they wanted to run
more tests. I finally was told that all the neurologists meet
early every saturday morning
to discuss a case that can not be diagnosed, put all the records
on a table,have a group
discussion,and come up with a diagnosis;and this saturday I was
the selected case. The
neurologist called to tell me I had probable paraneoplastic
syndrome and a test on monday
would probably confirm it (which it did). I was told as the tumor
was cured through chemo
and radiation, the pps would hopefully be transient and
dissappear.At this point I went
back home to Michigan for treatment.The tumor was cured,I got the
feeling back in my
legs,and everything was returning to normal.At this point I was
told I should have
radiation to the brain as small cell cancer travels in the
bloodstream and there was a
chance of a tumor in the future.Upon starting the radiation the
pps came back and has only
slightly abated.I am able to work every day but my sense of
balance is not what it once
was, and the tingling in my lower body is an annoyance.I consider
this only an annoyance
as the rest of my life is quite normal.
</p>
</li>
<li><p align="left"><strong>Carol
Lang</strong>.
Carol's husband, <strong>John
Lang</strong>,
was diagnosed with paraneoplastic syndrome in Sept. of 1988, at
the age of 45, after a
year of hospitals, doctors, tests and a misdiagnoses of MS. John
was a loving and caring
man with many attributes, not the least of which was a wonderful
sense of humour. He was
also a athlete, a writer, a sketch artist, and a musician with a
grade 8 piano in the
Royal Conservatory of Music. Before his illness he's was a
Maintenance supervisor for
Fletcher Challenge Canada, Elk Falls Division. Carol and John
have lived on Vancouver
Island, British Columbia, Canada for 22 years. They both grew up
in the small City of
Kimberley BC. They were married Sept. 14, 1963. They have three
children, Ray 34; Lori 33;
and Allan 29. They also have three grandchildren, two girls, and
a boy. Carol continued to
support John through his many years of illness and would like to
continue to be a support
to others with paraneoplastic.
<b>
John fought a long and hard battle which ended on Aug. 25,
1998.
</b>
<br>
For a more complete version of John's story see:
<a
href="http://www.angelfire.com/bc/johnlang"><u>http://www.angelfire.com/bc/johnlang</u></a></p>
</li>
<li><p align="left"><strong>Iolanda.</strong>
"Mum said something that summarizes the
last two years of my life quite succinctly - that I was
"never one to do things by
halves". I was diagnosed with both Hodgkin's Lymphoma
(Lymphatic cancer) and
Paraneoplastic Limbic Encephalitis in November 1997 at the young
age of 31. It all
happened at a happy time in my life. And then, to coin a phrase,
the walls started
tumbling down, but unlike a lot of encephalitis victims, my walls
took 9 months to
crumble. Now, 16 months after diagnosis, I am still plagued by
problems Since there is too
much to detail here, go to
<a
href=
"http://lw1fd.hotmail.com/cgi-bin/linkrd?_lang=&hm___action=http%3a%2f%2fmembers%2eaol%2ecom%2fdanielsown%2fencephalitis%2fiolanda%2ehtm"
target="_blank">http://members.aol.com/danielsown/encephalitis/iolanda.htm</a>
for the
complete story."
</p>
</li>
<li><p align="left"><strong>Cherrille
Mashore.</strong>I
am a 59 yr. old wife, mother, &
grandmother with a Master's in Sp. Ed.I had the privilege of
teaching school for 22 yrs.
before numbness & pain (in late '87) started in
my right arm & continued to
include all my limbs. After seeing specialists in OK to
no avail, we went to
Scott-White in Temple, TX in Feb. '88. They did days of
tests & concluded there
must be a cancer causing paraneoplastic syndrome. Doctors went
hunting & found cancer.
After pathology decided it was a breast cancer type,
the left breast & 40 nodes were removed. Twenty of
those forty were bad, so chemo was indicated. At this
time I was still walking &
doing okay. After three treatments of chemo,
was unable to walk unassisted.
Stopped chemo before it stopped me, but damage was
done & balance never
returned. Because my balance is almost non-existent, I use a w/c,
but can walk 6'-8' using
a walker & husband holding on to me. Had some physical
therapy as an out patient.
PT was useful for maintaining muscle strength, but no
one in PT had any experience
with this condition, so I was given exercises to do at
home. Long story short, I
gave up on neurologists (or was it--they gave up on me?
~smile~). Though doctors expected my paraneoplastic
to go away & it didn't, I consider myself fortunate
compared to many of our PCD
friends. I've been at this for eleven years,so please
write if my experiences can be
of any help.
<a href="mailto:chermash@brightok.net">chermash@brightok.net</a></p>
</li>
<li><p align="left"><strong>Marian
E. Sarmento</strong>
born in Toledo, Ohio in 1933 and
currently living in
<br>
Holland, Ohio, a suburb of Toledo, with her husband
<strong>Harold
L. Sarmento (Hal)</strong>.
<br>
Marian graduated from The University of Toledo in
Education and taught high
<br>
school business subjects prior to raising a family of five
children. She
married Hal in 1983. Hal has three children and
together they enjoy twelve
grandchildren.Marian successfully recovered from ovarian cancer
and a hysterectomy in June
1996. Six chemotherapy treatments followed at three
week intervals. Loss of
appetite and hair resulted but no severe side effects. In August
1997 she began to lose her equilibrium. Over the next four
months
her fine motor skills deteriorated so that she could no longer
write, knit or
crochet. She was dizzy and seeing double. Her
arms (more pronounced on the
left side initially) developed a tremor and shook
frequently. Her head also
shook from side to side. The ataxia has
continued. She lost control of her
legs so that she could no longer walk or support herself and is
confined to bed or a wheelchair.
During this time, her doctors (GP, Oncologist-Gynecologist,
Neurologist) performed many tests including cat scans, blood, MRI
and lumbar puncture
resulting in a diagnosis of paraneoplastic cerebellar
degeneration. Her
cancer markers (CA 125) increased during this period and six
additional chemotherapy treatments were ordered. The
cancer makers decreased to teens
<br>
with this treatment. In December 1998, her speech deteriorated
severely. After seven speech
therapy sessions, a slight improvement has been made but it is
still
<br>
difficult for her to speak and be understood. Currently, Marian
spends her days in a hospital bed getting up to eat and to
go to the bathroom. She need to be fed and while she
eats solid food, it is
difficult for her to chew and to swallow. She does not
seem to have any pain
<br>
and is otherwise comfortable except for the vision and
ataxia. She is in
surprisingly good spirits for her condition and is loved dearly
by Hal and the rest of the family. The other members of
IPA are a tremendous source of
support, love and comfort.
<br>
<br>
<br>
<br>
<br>
</p>
</li>
</ul>
<p>
</body>
</html>
