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Speaking From Experience…. Kerry Fannon, PMP MiPCT, Patient on the Patient Advisory Council. Of all my friends, I was the “picture of health”, at 53. Houston, We Have A Problem….

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Speaking From Experience…

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Speaking from experience

Speaking From Experience…

Kerry Fannon, PMP

MiPCT, Patient on the Patient Advisory Council


Speaking from experience

Of all my friends, I was the “picture of health”, at 53

Houston, We Have A Problem…

February 2012: 2 months before diagnosisSymptoms: 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 diagnosisFootball sized fluid filled “something”, pelvis starts to bulge, eating is more like nibbling


Speaking from experience

  • Getting To The Right Doctor for Diagnosis

  • Primary Care Physician

  • 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, MDInfinity Primary CarePark Family Practice

Ellen Higgins, PA-CRadiology

  • Friend Ellen From Church

  • 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 right diagnosis

  • Getting The Right Diagnosis

Getting To The Right Diagnosis

  • 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, MDOb/Gyn Surgical Oncologist


Speaking from experience

  • 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


Speaking from experience

  • Getting The Right Treatment – Lucky Me!

L

  • Getting Accepted As A Patient

  • “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


Speaking from experience

  • 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


Speaking from experience

It Can Only Get Better From Here

Getting back on my feet with about 12 tubes and drains, experienced nurses, and family support


Speaking from experience

  • Support – A Winning Team

  • Family, Friends & Prayer Support

  • Husband, Parents, Brother, Friends

  • Tens of churches praying for me

  • Hundreds of people I didn’t even know – friends & family of friends & family, etc.

  • Employer

  • 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.

  • Medical Team

  • Primary Care Physician & Care Manager

  • Nurses, Technicians, Specialty Doctors & PAs

  • TPN Nutritionist and Pharmacist


Speaking from experience

  • 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

  • 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)

  • Stay Positive and Help Others

  • Get on the path to recovery

  • Consider others are less fortunate

  • Share experiences/tips with other patients

  • Be positive, pray and be thankful


Speaking from experience

  • 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!

Recovery At Home Is Fancy Footwork


Speaking from experience

  • Medication Management Issues

  • Recovery

  • Medication management issues between hospital discharge from out of state, to Michigan, which included:

  • There were no medication orders to decrease pain medication for which the side effects may have resulted in a longer need for TPN

  • 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 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

  • Experienced extreme constipation which resulted in a trip to the Emergency Room


Speaking from experience

  • 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

Dr. Krauss, MD, medical oncologist Pamela Fisher, PA-C (not pictured)

HomeMed: Bethany

HomeMed: Mary

Canton Infusion Center: Alice

Many caring people who knew their stuff!


Speaking from experience

I Needed A Wig & Hats

It saves time getting ready for work so I can sleep longer I wanted to look healthy


Speaking from experience

  • 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.

Preparing to Return to Work Before Chemo

No one could tell it wasn’t my hair

Shannon – Wig Consultant

Kerry & Chris


Speaking from experience

FOLFOX4 Chemotherapy Side Effects

Fingers, toes, hair and skin took a beatingExtremely cold…even when bundled up at 72 degrees

Avoided germs with mask & gloves and was often a “shut-in”


Speaking from experience

MiPCT Care Manager

My Guide and “Safety Net”

Assisted Discharge planner in Washington D.C. with identifying TPN providers in Michigan

Supported me during the removal of sutures and recovery from major surgery

Provided weekly calls during recovery & Total Parenteral Nutrition (TPN) months to provide education and support

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.

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

Diagnosis through Treatment = 1 year

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

Oct ‘12-Jan ’13

Feb – June ’13

Sept ‘11

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

Jan ’12

Oct ‘12

Feb ‘12

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.

Mar-Apr ‘12

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

May-Jun ‘12

Recovery, TPN, get news I have secondary cancer and need Chemotherapy once off of TPN and stronger

July - Sep‘12

Returned to work Oct 1 50%, full-time by Oct 15th, started Chemotherapy the 4th week of October

Chemotherapy at Canton Infusion Center, used HomeMed for disconnect, participated in pilot for bolus (baby bottle-like infusion); no pump.

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 diseaseI’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


Speaking from experience

The best outcome each step of the way!That’s a story for another day…

http:[email protected]

God’s Providence


Speaking from experience

Thank You


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