Brian Pochel's Story
February 2006
Vital Statistics
Brian Pochel was diagnosed with
locally advanced, adenocarcinoma in the head of the pancreas
in February 2006, at the age of 38.
Background
Brian lives in Cottage Grove, Wisconsin
with his wife, Sheryl, and their four children.
Diagnosis
Locally advanced, adenocarcinoma
in the head of the pancreas. The initial prognosis was "a
year, probably not two".
What took you to the doctor in the first
place
I just didn't feel well after I
ate. I had a lot of indigestion and diarrhea. I was losing weight
rapidly.
How you were told, how you told loved
ones
My wife and I had friends with
us at the appointment. We thought we were there to discuss a
whipple, but were told that it was not possible and would probably
never be possible.
When/how you learned "the statistics"
We learned the statistics before
we had an official diagnosis. Initially because of my age the
Gastroenterologist thought I had pancreatitus. He said that there
was a possibility that there was a tumor, but he really didn't
think so. It was a few days later when he got my CA 19-9 back
that he talked about the fact that this was probably pancreatic
cancer. It was that afternoon that I started to research the
disease and found the statistics. I don't think Sheryl and I
slept at all that night.
Your initial response to diagnosis,
and that of your family/friends
Fear, despair, anger, hopeless.
What facility; what primary doctors
I am treated at the UW Hospital in Madison, WI. My oncologist
is Dan Mulkerin and I have the utmost respect for him. My surgeons
were Sharon Weber (whipple), Mustafa Baskaya (brain) and Greg
Hartig (neck). Radiation oncolgists were Mark Ritter (abdomen)
and Minesh Mehta (brain)
All of my doctors have been nothing short of fantastic.
Surgery
November 2006, 8 months after my diagnosis, I had the whipple.
I was told that I would never make it to that point, they had
never seen a case as "severe" as mine make it to surgery.
At the time they did my whipple they found no cancer, none. I
was NED for 15 months.
Clinical Trials
None
Chemo/Radiation
After I was diagnosed I had 6 weeks of radiation with xeloda
and oxiliplatin. This combination did give me some shrinkage,
but not enough to make it to surgery, so several weeks after
I finished that regimen I began doing GTX (Gemzar, Taxotere and
Xeloda). I did this treatment for 5 cycles (15 weeks). Then I
had my whipple.
Experience (physical, emotional)
I was extremely fatigued, but I
did manage to work part time. I went back to work (I am a Chiropractor)
2 months following my whipple. Emotionally it is still hard.
Dietary - Exercise
Gaining weight is hard and I need to make sure to eat regularly
or I lose weight quickly.
Alternative Therapies
I take glyconutrients on a daily basis.
Rediagnosis
In March of 2008, after being NED
for 15 months, my routine CT found cancer in my lung. One small
spot that had been there but grew from 5mm to 8mm. I was referred
to a thoracic surgeon who ordered a PET scan. The PET found that
not only was there the spot in my lung but also some lymph nodes
under my left clavicle that were cancerous. This was confirmed
by biopsy. We chose not to treat it immediately but to watch
and see what it did. The next scan however through us for a bigger
loop, a tumor in my brain was found. Days later I had surgery
to remove it. This was in May 2008. I again had to have radiation
but this time it was to my brain. I also participated in a study
with a parp inhibitor (it was specific for the brain). After
I completed that I again started GTX to try to get rid of the
cancer that was in my lung and in my neck. The GTX worked again,
but the cancer changed and a new lymph node showed up on a scan
in Nov 2008. My oncologist again recommended surgery instead
of trying a different chemo regimen.
In December 2008 I had surgery again to
remove some cancerous lymph nodes in my neck. Twenty-three were
removed and two were cancerous. At my last scan, which was in
February 2009, everything looked good except there is a lymph
node under the clavicle that is starting to show up again. However,
at this time my oncologist does not want to start treating it.
I am just now starting to feel better and I have been off of
chemo since October. He does not want to put me on chemo any
sooner than he has to.
Experience
Extreme fatigue, a lot of weight
loss which has been hard to reverse, but I am slowly gaining.
Emotionally it is very hard. I have a wife who loves me and four
young kids (at this point they are 9, 7 ,5, and 4). I do not
want to leave them.
Medical Team
My medical team has been fantastic. They were very aggressive
and treated my cancer as a statistic of one.
Primary Caregiver
My wife Sheryl has been by my side
for every appointment. She stayed with me in the hospital when
I had my brain surgery and would not leave my side. She has been
a strong advocate for me and has done endless research in an
effort to help me survive. She is so strong and I admire and
love her.
Other Family
Our kids have really helped me
pull through this. When I was first diagnosed our youngest two
were 2 and 10 months. I knew that they would never remember me.
Our youngest daughter would come up to me and grab my face and
make me kiss her. She didn't care that I felt awful, she just
wanted me to know that she loved me. Our kids have given me the
strength to fight and the strongest will to live. I love them
each so much.
Other family:
Our kids have really helped me pull through this. When I was
first diagnosed our youngest two were 2 and 10 months. I knew
that they would never remember me. Our youngest daughter would
come up to me and grab my face and make me kiss her. She didn't
care that I felt awful, she just wanted me to know that she loved
me. Our kids have given me the strength to fight and the strongest
will to live. I love them each so much.
My parents and in-laws have been a tremendous
support. The parents that are in this area help us with the kids
and my parents that are not here have come for each and every
big event and have stayed for weeks at a time which was so helpful
to us. We are so lucky to have such a great support system.
Friends, Neighbors, Strangers
Awesome. Neighbors helped with the yard work and with the
kids. Friends and strangers brought us meals. We have two wonderful
women who were strangers but are now friends doing our laundry
(which is a HUGE job for a family of 6!)
Support Groups
We attend a cancer support group that is in our little village.
Online Resources
Johns Hopkins Pancreas chat board, PanCAN and Pancreatica.
Books
There's No Place Like Hope by Vicki Giraard
Attitudes
It helps to have a good one!
What your doctor would say
My doctors would say that somehow
my cancer is different than others. It is adenocarcinoma, the
aggressive type, but somehow mine is different.
What you say
I don't know why. I have fought
hard to still be here. One of the things I did differently than
others is to take a nutritional supplement of glyconutrients.
I don't know if it made any difference, but I am not going to
stop taking it and find out!
Importance of hope
Hope is something that is NOT handed
out to people with pancreatic cancer but it is so essential.
No matter what you are hoping for, there needs to be hope somewhere.
Advice to other patients
Gather information, ask questions
of your Doctors until you understand or are satisfied with the
answer. If something doesn't feel right, then it probably isn't.
Get second opinions. Be aggressive.
Advice to primary caregivers
Know that there are resources out
there to help you cope with the stress. Support groups, chat
boards, organizations like Pancreatica and the Pancreatic Cancer
Action Network. There are people who have been where you are
and they are willing to talk to you, utilize them!
Advice to well-meaning others
Don't always ask how I'm doing.
Sometimes I just want to be me and not me with cancer. I appreciate
your concern, but I do like to go through my day and not think
about cancer.
Thoughts
I can say that I appreciate my
wife and kids a lot more. I make sure to spend a lot of time
with them. We've always been close, but this has made us closer.
I take time to do the things that I want to do. I practice random
acts of kindness for others. I try to plan for the future, that
is still hard, but I continue to try.
I hate that I have this cancer, but it
has given me some gifts too and I see things in a different way
than I did before.
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