Transcript 1000-1015-mipct-fannon-v1-4-2

Speaking From Experience…
Kerry Fannon, PMP
MiPCT, Patient on the Patient Advisory Council
Houston, We Have A Problem…
February 2012: 2 months before diagnosis
Symptoms: waistline started to bulge, gained weight for the first
time, bowel shape/size changed, and it was getting harder to eat
as much as usual
Apr 2012: 2 weeks before diagnosis
Football sized fluid filled
“something”, pelvis starts to bulge,
eating is more like nibbling
Of all my friends, I was the “picture of health”, at 53
Getting To The Right Doctor for Diagnosis
Primary Care
Physician
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Took me seriously; knew me
Quickly ordered Tests – Blood work, CT scan
Maybe a football-size fluid filled cyst; unsure
Introduced me to Care Manager, Paula Amormino
Helped clear lungs of Bronchitis JIT for surgery
Dr. Glenn Taylor, MD
Infinity Primary Care
Park Family Practice
Friend Ellen
From Church
Ellen Higgins, PA-C
Radiology
• What if it’s cancer? It DOES make a difference to
have a cancer surgeon in case it is cancer…and,
why not the best?
Getting
To The
TheRight
RightDiagnosis
Diagnosis
Getting
The Leaders
and Best
• I was diagnosed in 1 visit – unusual of for PMP
• She knew the treatment – too many doctors don’t
know there is treatment and tell patients told there is
no hope and suggest hospice
• There is only 1 surgeon in Michigan who does the
treatment, but is not comparatively experienced with
“the best”. It’s important to have “the best” first
surgery, to postpone any subsequent surgeries as long
as possible as usually no more than 3 are possible
• Experienced doctors like “The Master” were far away
Dr. Carolyn Johnston, MD
Ob/Gyn Surgical Oncologist
Pseudomyxoma Peritonei (PMP) – “One in a Million”
• A rare, mucin generating Peritoneal Surface
Malignancy (PSM), which leads to fatal bowel
obstruction/starvation
• It is considered slow growing and usually
does not spread to lymph nodes or through
the blood stream; regional
• It may originate in the Appendix or Ovary
and is considered one of several different
types of Appendix Cancer, and may be
discovered during a Caesarean section or
appendectomy
• Standard treatment*:
- Complex Cytoreductive Surgery (CRS)
- Hyperthermic Intraperitoneal Chemotherapy (HIPEC)
*a highly skilled and experienced specialist is required and
will have performed >330 treatments
Getting The Right Treatment
– Lucky Me!
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Getting Accepted
As A Patient
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“The Master”, Dr. Paul Sugarbaker, MD, FACS, FRCS
Pioneered and advanced the treatment over 20 years
Published 780+ scientific articles in peer-reviewed journals
Nearly stopped practicing 15 yrs earlier
Still practicing at 70 when he operated on me
He gets lots of requests, I’m glad he could work me in!
I prayed daily for his protection riding his bike to work
My lungs finally got cleared 3 weeks before surgery!
Dr. Paul Sugarbaker, MD, FACS, FRCS
Surgical Oncologist
My First Surgery
Insurance
• My surgeon required a “one-time” contract
• I hired The Insurance Warrior to help
Laurie Todd TheInsuranceWarrior.com
Surgery and
Hospital Stay
• I felt I had the best surgeon/care team for PMP
• This was the hospital’s “biggest” type of surgery
• I was the featured “live surgery” for the conference, and
participants told me I had “nice anatomy” LOL
• In 10 hours, they removed 5 liters of mucin, 8 organs, the
peritoneal/pelvic/liver linings, nodules on outsides of
other organs, and gave me regional chemo (HIPEC)
• The surgery was rated a “1” on a scale of 1 to 25 – great!
• I experienced 20 extra lbs of fluids, insomnia, hair loss, 5
JP drains, 2 chest tubes, etc. during my 2.8 week stay
• Issues: naso-gastric tube, interrupted rest, call button
It Can Only Get Better From Here
Getting back on my feet with about 12 tubes and drains,
experienced nurses, and family support
Support – A Winning Team
Family, Friends &
Prayer Support
Employer
Medical Team
• Husband, Parents, Brother, Friends
• Tens of churches praying for me
• Hundreds of people I didn’t even know –
friends & family of friends & family, etc.
• Extremely supportive: “…Whatever it
takes.” They provided a role where I could
make valued contributions working from
home which allowed time for proper care
during my recovery.
• Primary Care Physician & Care Manager
• Nurses, Technicians, Specialty Doctors & PAs
• TPN Nutritionist and Pharmacist
Patient Learnings – My Success Factors
Be Your Own
Advocate
• Manage your health like a project
• Take initiative, question and get informed
• Hire an insurance warrior if needed
Leverage the
Internet
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Patient portals (NextMD, U-M..)
Google to find & discern information
Caringbridge.org communication saves time
Disease-specific support organizations like
PMPPals.org & Mentors (via email/phone)
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Get on the path to recovery
Consider others are less fortunate
Share experiences/tips with other patients
Be positive, pray and be thankful
Stay Positive and
Help Others
Recovery At Home Is Fancy Footwork
Total Parenteral
Nutrition (TPN)
At Home
• Care manager identified companies providing TPN at home
• Company provided weekly dietician and pharmacist consults
after lab work drawn, nurse provided support
• I learned to administer TPN and experienced only
a few pump issues
• It took 2.5 months for blood work to fall into normal ranges
Home Recovery
Concerns
• Physically – fatigued with 100 bpm heart rate for 3 months,
night sweats, insomnia days at a time, dry mouth,
dehydration, couldn’t eat much, you name it!
• My food tray, nausea bowl, phone & intake log were close by
• It was scary being alone in case I needed help and the not
knowing when I would return to my normal routine
• Nothing fit & elastic hurt so I wore sweat pants for 2 months
• I couldn’t sit long at the PC and walked to build endurance
• We hired out the housework
• I was isolated and looked forward to medical appointments
to confirm everything is “ok” and I’m making progress
• I enjoyed watching the birds on the birdfeeder and the little
critters beneath it and amazed at God’s creation, and how
the body “just knows” what to do to heal itself!
Medication Management Issues
Medication management issues between hospital
discharge from out of state, to Michigan, which
included:
1) There were no medication orders to decrease
pain medication for which the side effects may
have resulted in a longer need for TPN
Recovery
2) Medication changes were made but not updated
on the discharge sheet so I was taking higher
than recommended does of Tylenol, felt
miserable, and resulted in a longer need for TPN
3) 3 times the lab didn’t process blood in time as it
was wasted, causing additional “rush” blood
draws to be able to adjust my TPN
4) Experienced extreme constipation which
resulted in a trip to the Emergency Room
The Pathology Report – Cancer #2
• They found a “fast-growing” secondary cancer,
of aggressive looking PCMA-I* cells found in the
pelvic lining and ovaries
*peritoneal mucinous carcinomatosis – intermediate stage
• Treatment – FOLFOX6 Chemotherapy
• Genetic Counseling and Testing – results were
negative for Lynch’s Syndrome
HomeMed: Mary
HomeMed: Bethany
Dr. Krauss, MD, medical oncologist
Pamela Fisher, PA-C (not pictured)
Canton Infusion Center: Alice
Many caring people who knew their stuff!
I Needed A Wig & Hats
It saves time getting ready for work so I can sleep longer
I wanted to look healthy
Preparing to Return to Work Before Chemo
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My Care Manager helped me rethink my self-expectations and new routine
I had help finding a great wig to wear at “Susan’s Special Needs” in Ferndale
My employer reassigned me to the closest parking garage, as I tired easily
Work kept me preoccupied and was a positive distraction. I was surrounded by
caring leaders who made sure I didn’t “over do it”, which is my nature.
Shannon – Wig Consultant
Kerry & Chris
No one could tell it wasn’t my hair
Chemotherapy Side Effects
Fingers, toes, hair and skin took a beating
Extremely cold…even when bundled up at 72 degrees
Avoided germs with mask & gloves and was often a “shut-in”
MiPCT Care Manager
My Guide and “Safety Net”
1) Assisted Discharge planner in Washington D.C. with
identifying TPN providers in Michigan
2) Supported me during the removal of sutures and recovery
from major surgery
3) Provided weekly calls during recovery & Total Parenteral
Nutrition (TPN) months to provide education and support
4) Assisted me in preparing to return to work by setting realistic
expectations with myself and my employer. This included a
flexible work schedule to accommodate Chemotherapy
treatments while providing a valued work assignment.
5) Assisted me in planning for Chemotherapy which included
thinking about timing around year-end holidays, managing
working and home life during Chemo, side effects, level of
energy, protecting myself from getting sick from other
people, etc.
Paula Amormino, RN, MSA, CCM
MiPCT Central Clinical Coordinator
Diagnosis through Treatment = 1 year
Sept ‘11
Jan ’12
Feb ‘12
Mar-Apr ‘12
May-Jun ‘12
July - Sep‘12
Oct ‘12
Subtle pin prick and elastic band sensations around the waist, and a “hitch” on right side
Uncharacteristic waistline bulge and weight gain, in spite of caloric reduction
Primary Care Physician (PCP) was not available, so I saw another doctor in the practice and had an
ultrasound but nothing found…I needed a pelvic ultrasound
I insisted on seeing my PCP, had pelvic ultrasound, then a CT scan-issue but not sure what it is.
A gynecologic surgical oncologist makes the diagnosis.
Surgeon accepts me as patient, recover from Bronchitis 3 weeks before surgery, shut-in to stay healthy, got
insurance to cover Surgeon 1 week before, surgery videotaped as part of conference at the Hospital
Recovery, TPN, get news I have secondary cancer and need Chemotherapy once off of TPN and stronger
Returned to work Oct 1 50%, full-time by Oct 15th, started Chemotherapy the 4th week of October
Oct ‘12-Jan ’13
Chemotherapy at Canton Infusion Center, used HomeMed for disconnect, participated in pilot for bolus
(baby bottle-like infusion); no pump.
Feb – June ’13
Worked full-time from home full-time, mostly shut-in, to stay healthy and away from germs. Finished
Chemo end of April. Went to “Health Camp” for a week in May.
What’s next?
I’m given an 80% probability to live 20 more years without this disease
I’m monitored for recurrence; currently no evidence of disease (NED)
I’m working on lifestyle changes (nutrition, exercise, stress management,
spiritual wellness, etc.) to strengthen my immune system and prevent disease
God’s Providence
The best outcome each step of the way!
That’s a story for another day…
http://www.caringbridge.org/visit/kerryfannon
[email protected]
Thank You