Melanoma
Warriors Page
1 My
battle
with the
BEAST
began
in Feb.1996.
I had
a very
benign
looking
mole on
my L knee.
Because
it started
to itch
I had
it excised.
It turned
out to
be a Clark's
Level
IV (1.4mm)
malignant
Melanoma.
Had wide
excision
May 1996.
No SNB
was done,
not even
mentioned
to me.
I guess
they hadn't
heard
of it
way up
here in
Maine!!!
Saw a
PA at
the Cancer
Clinic
(BIG MISTAKE)
and, because
I was
on some
immunosuppressants
for my
Rheumatoid
Arthritis,
I asked
him what
would
the effect
be on
the MEL.
He told
me no
studies
had been
done so
continue
with current
treatment!!!!!!!!!!!
I also
was told
no further
visits
to oncologist. In
April
of 1997,
during
a routine
6 mos
check
with Derm,
an enlarged
node in
L groin
area was
discovered.
Bx was
done next
day and
indicated
mets to
lymph
node.
Had Lymph
Node Dissection
done in
May. High
dose Interferon
was not
started
until
July 1997
(due to
slow healing).
This was
not tolerable
and I
only completed
5 months
of therapy.
I have
routine
visits
to the
derm every
6 mos.
and every
4 mos
. to the
Oncologist
(not the
PA) and
CT Scans
of abdomen
and pelvis
every
6 mos.
I have
been NED
for 3
years
and 4
mos. I
pray every
day that
the BEAST
will not
return.
I have
undergone
4 radical
surgeries
on the
primary
site requiring
skin grafts,
and 3
groin
surgeries.
And too
many punch
biopsies
in the
upper
and lower
leg to
count.
While
doing
the Mart
1 and
GP-100
vaccines
I had
2 groin
lymph
nodes
remain
stable
for 31/2
years.
Late
in 1999
I started
noticing
changes
in my
primary
site and
notified
NIH and
my home
Oncologist.
At which
time punch
biopsies
were done
and reported
as positive
for Melanoma
went back
on GP-100
on higher
dosages
and every
week instead
of the
usual
3 weeks..
with no
change..
In
early
2000 there
was a
change
in one
of the
lymph
nodes
in my
groin
with me
finding
it and
with it
showing
on ct
scans...I
was then
put on
the VNP-20009
Protocol
did 2
rounds
of this
at 3 times
the normal
dose.
As of
August
2000 visit
I am again
stable.
Next visit
Oct 16th... If
you'd
like,
you can
read a
little
more of
our story
here.
If
you
would
like
to submit
a picture
for
inclusion
on our Melanoma
Warriors
Page
1
Page 2
This
is a picture
of my
daughter
Katie
who was
diagnosed
Jan 4
2000 with
stage
III mm
at the
age of
16. She
started
interferon
in Feb.
after
we gave
up all
hope of
getting
her into
a vaccine
trial.
The FDA
requires
that the
patients
be 18
years
or older.
Finally
with the
help of
our US
Senator,
Max Baucus
we were
able to
convince
Corixa
(makers
of Melacine)
and the
FDA to
allow
Katie
compassionate
use of
Melacine.
To date
she has
had four
injections
of the
vaccine
and continues
with her
INF injections
which
will be
done in
Jan. 2001.
Best of
luck to
all,
Patrick
Craig
plc_kalmt@yahoo.com
DonF
& Sue
Married
23 years.
Two kids
age 18
& 21.
Also one
big ol'
dog. We
live in
Connecticut.
Sue was
diagnosed
in 1995.
Sue's
info can
be found
in patnet
under
"bigdanedog".
The information,inspriation,
caring,
sharing,
love and
prayers
on the
MPIP bulletin
board
are greatest
gifts
that all
of us
can give
to one
another.
My
name is
Bill Ray,
and here
I am on
a hike
in New
York's
Catskill
Mountains
with my
wife Lynn
and my
son Kevin.
I was
diagnosed
Stage
III in
January,
1999,
completed
a year
of Interferon
treatments,
and have
been all
clear
since
then.
Ingrid
Lorenz,
age 50,
single,
stage IV
diagnosed
March 2000.
I live in
Australia;
having migrated
here as
a child
from Germany.
I am extremely
grateful
to be a
member of
the MPIP
family.
I thank
you all
for sharing
your friendship,
knowledge
and most
caring messages.
Bonnie
Barnard,
age 44.
Married
to Jerry
for 24 years.
Two grown
children,
ages 23
and 21.
I am a surgery
technician
in my field
of work
for 21 years
now. Enjoy
camping
and canoeing,
and am too
experienced
with home
remodeling.
Diagnosed
with Stage
3 MM in
Sept. 1999.
Hi
All (from
Glenda),
Primary
removed
in 1994.
Stage 4
since 1996.
I am 58,
married
for 33 years
to my best
friend Dave,
2 children
and 2 grandkids.
(The grandkids,
Lona and
Colton,
are my favorite
pastime).
I consider
myself a
happy person
with an
optimistic
attitude.
I spend
each day
enjoying
life to
the fullest.
I refuse
to let this
mm monster
control
my life!!!
My
name is
Laurie
Milan.
I am 42
years
old and
have a
husband
Dan, 2
sons,
Joey who
is 15
and Mike
who is
13, and
a loving
Springer
Spaniel
named
Sadie.
I
am Dianne
Bonner Heer,
known as
Di. I live
in Dorchester,
near London,
Ontario.
I have had
MM for six
years.In
December
I was diagnosed
Stage 2
Level III,
then one
year later
it came
back to
my lymph
nodes. My
doctor put
me on Levamisole,
an immune
booster,
for four
years. It
started
to damage
my liver
so they
took me
off of it
about six
months ago.
I am NED
for five
years in
Dec. I feel
very lucky,
and blessed.
My email
is heer7145@home.com
I
am Lana
Ricketts,
48, married
to Bruce,
one daughter,
Kelly, age
21. I live
in East
Central
Illinois.
Mole on
back removed
in 1986-benign.
7cm tumor
in left
axillary
nodes removed
in 1997-Stage
III. Entered
vaccine
clinical
trial in
1/98 with
Dr. Barry
Gauze at
NIH. NED
so far.
Thank you
all for
this BB.
lcricket@newman.net
Cindy,
mm diagnosed
7/97; 1
year interferon;
cotton-wool
side effect,
but completed
in 11/98.
Stage III,
NED since
11/99.
I
am Linda
P., age
40, stage
III. I was
diagnosed
in April
2000 and,
prayerfully
will remain
stage III.
I am the
mother of
two girls,
ages 11
and 7, live
in New Jersey,
and work
for a generic
pharmaceutical
company
in business
development.
I am grateful
for all
the knowledge
and friends
I have made
on the MPIP
board.
Jim
Deans(JD)
and mercifully
tolerant
spouse at
Mabry Mill
on the Blue
Ridge Parkway.
Jim is not
usually
quite this
careful
at avoiding
the sun.
Hello
my name
is Betty
Most know
me as
Angel.
I was
diagnosed
in 1993
with a
Clarks
IV in
my right
calf.
I did
18 months
of interferon,
with a
reoccurrance
first
to the
primary
site then
to the
groin.
I then
did a
cocktail
of, interferon,
interlukin
2 and
5fu, with
another
reoccurrance
to the
groin
lymph
nodes.
I
was then
accepted
into Dr.
Rosenbergs
group
at NIH
in1995
after
HLA testing
as HLA-2.
During
my time
at NIH
I have
had incredible
responses
to the
Vaccine
Protocols..
while
taking
Mart 1
I had
about
9 sub
q tumors
disappear
and with
none reoccurring
thus far.
I
have also
gone on
to do..
GP-100,
ADNO GP-100..
and a
combination
of Mart
1 and
GP-100.
Jim
Rogers
I'm 47 years
old, and
Diagnosed
stage 3
, Breslow
5.04 in
January
2000, started
Interferon
in February.
Now into
my 7th month.
I've lost
a lot of
weight since
this pic
was taken.
I'm a Square
Dancer,
Plus level,
but haven't
had the
energy to
dance much
recently.
I've learned
so much
from all
the folks
on MPIP.
I can never
thank you
all enough
for your
support
and caring
attitudes.
My
name is
Jill (jilla
on MPIP)
and this
is my husband,
Don. He
is a stage
IV survivor
with a brain
tumor that
was resected
in November
of 1999.
Don has
undergone
radiation
and chemotherapy
and as of
July is
NED. We
go to baseball
games and
travel whenever
we can.
Don loves
baseball,
especially
the Yankees!
Hi;
I'm Gia
Only pix
I could
find not
exposed
to the sun
(and looking
very dated.:-)
Two MM stage
2 primaries
13 years
apart. Avid
silent member
of MPIP
family:
knowledge
helps keep
fear in
check. I
feel a member
of this
cyber family
after only
coming aboard
Nov.'99
Only reason
I learned
to use computer
also.
My
name is
Robert Stewart.
I had MM
34 years
ago and
use alternatives
I was given
a slim to
none chance
to see 10
yrs well
as I said
it's been
34 yrs NED
this disease
is a beast
I
am Carol
L; 51, married,
4 children,
3 grandchildren.
Diagnosed
MM in 7/99.
Breslow
1.68; Clark
Level 4.
and am in
Stage II.
So far,
I have not
had any
recurrences
or new surgeries,
other than
the WLE
and the
SNB. I try
not to worry
about this
disease.
My motto
is "Do your
best, don't
sweat the
rest." (Hey,
it works
for me!)
The bulletin
board has
done a lot
to help
me understand
what I am
dealing
with.
Jacklyn
I am Grania
I live in
London,
UK and work
as a classroom
assistant.
I have 4
children
including
triplets
which keep
me busy.
I was diagnosed
with MM
in March
2000. I
had WLE,
no further
treatment,
just keeping
an eye on
my moles!
The
bulletin
board has
been a great
source of
information
and inspiration.
Love
and Laughter
from Jan
F. After
my diagnosis
(2/99) my
daughter
(with camera)
and I went
on a hike
to try and
sort things
out. We
walked,
talked,
laughed
and cried.
At one point
we were
resting
by a stream.
A magnificent
Monarch
Butterfly
landed on
a rock before
us and fanned
it's wings
in the sunlight.
I stood
up, raised
my open
palms to
the heavens
and said
outloud,
"Oh God,
wouldn't
it be amazing
if that
butterfly
came and
landed on
my hand!"
Amazingly...it
left the
rock, fluttered
above me
and came
to rest
on my open
palm. You
can see
it in my
right hand
in the picture.
It was one
of those
"spiritual
moments,"
to say the
least. That
butterfly
was the
messenger
of hope.
There IS
a power
greater
than ourselves.
Our cries
ARE heard!
There is
ALWAYS hope!
Here's
Frank Tyrrell,
55, and
diagnosed
10/97. SNB/WLE
performed
on Breslow's
1.15 lesion
11/97. Both
procedures
clear of
melanoma.
Quarterly
followups
since then
with no
adjuvant
therapy
of any kind.
I'm a saltwater
fisherman,
but I support
this habit
with work
as a journalist.
I don't
think about
or visualize
recurrence
in hopes
that I don't
create a
bad reality
for myself...the
world being
what you
make it.
I'm present
on the MPIP
bulletin
board returning
the favor
it did for
me three
years ago
when I was
a newbie
to this
disease.
Peace and
Love.
We're
Jeff and
Lori Patterson.
We started
the MPIP
in 1995
and since
then have
been very
blessed
to come
to know
so many
brave
and wonderful
souls.
Melanoma
Warriors
page,
please
send
us an
email.
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our
Memorial
Page