My Carcinoid Story
by
You may contact Bill via email billmargie@comcast.net
June
2003
My
experience with Carcinoid Syndrome began in January 1995 although I did
not
know it at the time. It was late in the
month when the wife and I went to a local hardware store to purchase a
furnace
filter. Overcome by a very strange
sensation I asked Margie if she could smell something “strange”. She replied no and asked me what it smelled
like. I could not identify the smell or
for that matter if it really was a smell… more like a burning sensation
in my
nose, throat and chest.
After
a few moments it passed and we proceeded to search for the filters. About 60 seconds later it hit me hard. I had no idea what was going on.
I only knew I was sick and needed to do
something about it right now. We left
the store and the wife drove us to a nearby hospital where upon a brief
examination in the parking lot they determined I was having a heart
attack! And so I was.
They lost me for a short while but when I
awoke it began a very long day of treatment followed by surgical
procedures and
medications.
It
is because of the medications that my primary physician and I were
thrown off
the track about symptoms we now recognize are related to Carcinoid
Syndrome. The doctor expressed the
opinion that my flushing and diarrhea were related to undesired but not
unexpected effects of heart medications.
Twice
a year I visited with the primary care physician and once a year
visited the
heart doctor for tests. Each time I was
pronounced as being in extremely good shape… for a man my age and
medical
history. In fact at 59 I was told I
could outdo most 40 year old men on the treadmill.
At
each of these visits and those occasions I had a cold or some problem
that sent
me to the doctor’s office I brought up the matter of increasing
incidences of
flushing and diarrhea. Each time I was
told the same thing, reaction to the medications. And
so it went until March 2002. Yes, seven
years later!
By
March 2002 the diarrhea had advanced to the point that it was socially
embarrassing which prompted an “early retirement” and I did not leave
my home
office very often. Taking meals with
business associates and friends had been dwindling due to the
embarrassing
flushing events when my neck, face and head became extremely red and
always created
comments at the table.
But
now I was becoming weak, listless and apathetic. I
had started a consulting business to work
out of my home office during hours I wanted and doing the kind of work
I wanted
to do. Even with that freedom, I just
didn’t feel like doing anything and the symptoms got worse.
In
May I knew something was terribly wrong and that after all this time my
doctors
could not or would not even look into the possibility of something else
causing
my problems. So I contacted the Sansum
Clinic
in
The
tests indicated it was the worst possible cause, Carcinoid Syndrome. Of course we had no idea what that was but
the doctor explained the condition was consistent with my symptoms. It wasn’t until about the fourth or fifth
meeting with the doctor that week that he used the dreaded “C” word,
cancer. I still recall the shock of
hearing it for the first time as it related to my condition. We had been discussing the possibility of a
tumor but this was the first time it was suggested it was other than
benign.
They
recommended surgery and we took that under advisement as we returned to
our
home to consider all the options. During
the next several days the pain grew worse each time I would eat and
create
“movement” in the intestines. The main
cancer mass and tumor was located at the point where the small
intestine meets
the colon and it failed to show on all tests with the exception of a CT
scan. This scan also showed that the liver
was
fully involved with over 20 tumors.
We
accepted the doctor’s recommendation for surgery and in late August
2002 a
considerable amount of my internal parts were removed.
A biopsy of these parts revealed cancer was
involved in each one. The tumors in the
liver were to far advanced for surgical procedures.
For the first time we learned that this was
incurable and inoperable.
The
only good news was it was a “slow growing” cancer.
I asked what that meant. Did that
mean I got to live longer with the
problem? Take longer to die than those
with “fast growing” cancer? Why can’t it
be operated on? Why isn’t it
curable? And many more questions that
all support the denial portion of my journey.
This passed quickly but it was still a shock.
I began
a regimen of LAR injections of Sandostatin for the Carcinoid Syndrome
in
November 2002, and Testosterone for physical weakness in February 2003. I understood that in time the liver might
build up antibodies to the medication and reduce its effectiveness. In the beginning to intermediate stages this
can sometimes be estimated but in advanced cases such as mine, well, no
one
knows. We all take it one day at a time.
Statistically,
life expectancy from the onset of symptoms has been stated around 7.42
years. Just about the same amount of
time the doctors ignored my symptoms and complaints.
It has been over 8 years and although my case
is in an advanced stage, I am still here and able to function. OK, not like before but then I am not
confined to 30 paces from my toilet. I
eat a lot of things I simply could not before the surgery and
medications, and
that is a big improvement.
I
have avoided documenting the details and statistics of my journey with
Carcinoid Syndrome since every case seems to be as unique as the
individual. What we are all interested
in is what will happen next. Will there
be pain? How long do I have?
No one is comfortable discussing these issues
but yet that is what we all want to know.
Here
is the answer; but I warn you, it is not very satisfying.
It differs for each person. Your
journey is just that, your journey. The
end of your life is as unique as how you
lived it. Not everyone lives exactly the
same or passes the same. How is will end
for others is not necessarily how it will end for you.
When
I was born, 65 was the life expectancy for most children in the
It
may be important to point out that maintaining a positive attitude is
very
helpful. There is always hope. Hope for a cure, a significant delay, a
reversal, anything that will help you feel better.
Yet we all know that someday this life’s
journey will come to a close. Don’t let
the illness defeat you. It is a major
problem but your whole life is not the Syndrome. It
is just one of the many things you have to
deal with and you have dealt with a lot of other issues in your life. So kept on keeping on.
Believing
that every life story should have a moral, or at least a purpose, here
is my
encouragement to anyone reading this and trying to learn more about
Carcinoid
Syndrome.
Take
responsibility for your own body!
Doctors are very much like any other profession.
They can advise but it is YOU that must
decide! They are busy doing a fantastic
job for the most part and society is and should be indebted to those in
this
profession. But, they are not perfect
and given their case loads, insurance companies, government
regulations, etc.
they do a wonderful job. Only you know
your body and how you feel. Don’t accept
fast answers if it just doesn’t seem right.
Get another opinion.
Don’t
wait to long! If I had acted upon my
condition a few years before I did, I might have a good chance of
extending my
life expectancy not to mention the quality of life.
(And keep my innards).
Don’t
let the condition dominate your entire life.
As long as you are still alive, live!
Do
not accept defeat. Only you can let
yourself be defeated.
When
I learned about my condition I wrote the attachment and during the past
several
months my opinion has not wavered. If
you find some comfort from this then please use it to your best
advantage.
May
God continue to bless and keep you and yours.
Bill
Evans
Update: As
expected the medication has been
compromised. A recent CT scan revealed
that the tumors are growing again. Pain
has become a 24/7 situation. Usually it
is just darn uncomfortable but then about once a day, the pain hits
incredibly
hard. Bad enough to send me to my knees
crying. The doctor has increased my
medication to a 30 gram shot of LAR every two weeks.
He plans to start chemo in perhaps October.
The
latest CT Scan shows that 5 of the tumors have grown together and
represent a
mass that measures 7 X 5 X 4 cm, about the size of a large avocado. The second largest mass is just a little
smaller. There are still numerous small
tumors. I am receiving the maximum
amount of LAR every two weeks, the minimum time frame, and there are
continuing
and increasing signs the medication has been compromised.
It can only get worse.
I
am on my fourth chemo treatment which is administered 24 hours a day
for 5
days. Then a rest for 23 days and start
over. It makes me sick and weak but the
doctor
seems to think it is helping. There is
no clear evidence that is the case. Each
time I have this treatment I must drive 100 miles round trip and 3
times during
the treatment period. This is proving to
be a burden so I am looking for another doctor in my town that is
familiar with
Carcinoid Syndrome treatments.
I wrote
to the two
September
2004
Well,
we heard back from the elected officials and learned that the FDA does
not seek
out drug therapies to approve. They must
wait until the drug and its data is submitted before they can take
action. The drug company has not finished
their
studies and not submitted any requests to the FDA for approval. So much for that course of action.
The
LAR continued to decline in effectiveness and usually “wear off” about
7 to 10
days after the injection. That leaves
about 4 to 6 days every two weeks where there is minimum relief from
the LAR.
With
the kind assistance of my new Oncologist, who is located in my same
town and
much easier to access, we stopped the chemo, which was not apparently
helping
in any manner, and found a clinical trial at UCLA in
Went
to UCLA and found a wonderful group of dedicated professionals that
were very
helpful. However, their trial was not
appropriate for my condition. Most of
the trials I looked at had a list of conditions that one must meet
before they
can be accepted. Like age, sex, previous
health events, current condition of the disease, etc.
I was not eligible for any of them.
When
we returned from the UCLA trip I was feeling somewhat hopeless. It was one of those, “Now what do we do?”
times. Then by chance, or divine
guidance, I went online to http://clinicaltrials.gov/
and learned of a program being conducted at Cedars-Sinai in
On
This
should give better results for a longer period of time.
But that is what the study is to determine. Not
publicized but very important is the side effect of shrinking existing
tumors. Many patients in stage 1 testing
reported this effect.
It
is a six month study and if it works it may just extend my life
expectancy by
up to two more years. If it doesn’t
work…well I’m no worse off than I was before.
The only downside to the study is daily self injections. I’m not a fan of needles.
On
September 7, I had my last LAR shot and am in the process of weaning
myself off
of the long acting drug with sub-q injections of Sandostatin. After four weeks of this I must STOP all
drugs before administering the SOM230.
That will be the rough period. I
really don’t want to go back to the experiences I am familiar with
before
Sandostatin. But it will be done!
Update. We
started the trial of SOM230b on
However,
during the course of the treatment and trial, we learned that one of
the
world’s best liver surgeons, Dr. Nick N. Nissen, was working out of
Cedars
Sinai. I asked our team doctors, Lim and
Heaney about Nick and they not only knew him, he was very good buddies
with
Heaney.
Dr.
Heaney showed Nissen my CT scans and other reports to Nissen and they
discussed
the case. I was asked to meet with
Nissen and when we did, imagine my surprise to learn that he thought he
could
help me with a resection of the liver.
He went on to state that I was strong enough to withstand the
procedure
and where they turn down about 8 out of 10 with a similar condition, I
was one
of the lucky ones they would consider.
To
my amazement I learned that the liver will grow back, usually with
several
weeks. And what grows back will be
healthy! Wow! Why
had this not been mentioned by anyone
before?
So
on
In
3 months I will return for another treatment, Radio Frequency Ablation,
a
process where they insert a rather large needle into the liver, guide
it into a
tumor and then turn up the heat which “cooks” and kills the tumor. They propose to do this to the one ping pong
ball size tumor in the left lobe. The
remainder of the tumors, about marble size, will be left alone for now
since
they are too small for most procedures.
What
a journey it has been! From inoperable
and incurable to gaining the function of my liver again!
I’m not well and I know this is not a cure
but we are sure delaying the victory that Carcinoid had in mind. My symptoms have greatly reduced and I am
hopeful I will be able to return to some chores around the house in a
few
months.
Death has not conquered!
I have been released! From a body that was in decay, growing weaker, and would have given out at some point in the future anyway.
I have been restored! In
a new body as promised by my Lord Jesus
Christ.
I am reconciled with my Lord for eternity.
I am remembered by so many loving and caring
friends
and family that I will continue to live in their hearts.
I am grateful to my God for the privilege of
having
a wonderful life.
I thank my God for the opportunity to learn
and grow
the way He wanted.
I had many failures but only one victory was
necessary and He provided that!
I don’t want to start a list of those I have
loved
and who love me, but of course the one person that cannot be ignored is
Margie. My very best friend and
companion for life. We took a vow that
we lived everyday. As a result, we truly become one as God has so
ordered in
His Word. All of His blessings were
bestowed upon us. No one has ever had it
better than we did.
My life was one of complete contentment. God filled every need. My
wife and I loved each other
completely.
So I ask, “How could death possibly conquer?”
Once again, God has the final victory. To Him I give my life. A
poor offering indeed but it is what He
asked for.