My dad, Gene's Story

[Guest guest]

I hope everyone can be patient with me. I know this is long. My

mother has been keeping a chronology of my father's illness and done

a wonderful job. I thought that if I posted it on different boards

that someone will have been in the same situation or have known

someone who was. We cannont get any answers other than chronic

pancreatitis. He is symptomatic of someone with pancreatic cancer

other than he is still alive. They said if it was cancer he should

have been dead by now. We just need help and direction. He is 65

and lived a very healthy life no drinking or smoking and has worked

out almost all of his life. If anyone has any thoughts or

suggestions will take anything. My email is db113067@...

Thank you for you time in reading this.

Re: " Gene "

Quick chronology of progression of the disease:

Onset of digestive difficulties began approximately 30 years ago

including chronic constipation, gas, bloating and light colored

stools. Use of glycerin suppositories and laxatives began along

with changes in diet to include daily intake of excessive fiber and

liquids including large quantities of diet sodas. Approximately 13

years ago the disease manifested itself with the following symptoms

in repeating cycles lasting several months followed by some

improvement for a couple of months: extreme fatigue requiring

several naps per day and approximately 10 hours of sleep each night

and then falling asleep when at the office or driving, grayish

color, some mental confusion or disorientation, ambient anxiety,

extreme constipation, severe joint pain, skin on face, neck and

chest became much redder and hair became more wiry. Uncontrollable

hiccups were frequent. There was chronic pain daily. It usually

occurred in bilateral joints including both shoulders, elbows,

thumbs, knees and one toe. If the pain were not in a specific

joint, he would describe it as feeling like he had a severe flue

with aches and pain all over. He took vicodin, darvocet, oxicontin,

percocet and percodin for pain and anti-inflammatories including

soma, flexeril, and naprosyn for over seven years. He eliminated

sugar and red meat from his diet. He took handfuls of vitamins and

supplements to improve his immune system and to aid in digestion.

Because he appeared to be unoxygenated, we suspected a coronary,

pulmonary, or circulatory problem. He began seeing Dr. Marvin

Goldstein, a cardiologist on a monthly basis for over two years.

Dr. Goldstein did blood work monthly but never specifically

diagnosed the problem or prescribed any effective treatment.

Triglycerides were in the 900 levels. He identified the condition

as chronic fatigue syndrome or fibromyalgsia. During this time he

was put on Synthroid to try to improve his energy level and Zoloft,

Wellbeutrin, and Prozac for the anxiety. During physicals, he

consistently did poorly on test to measure lung capacity. He also

had difficulty concentrating and with memory. During this time he

also suffered chronic back pain in addition to severe joint pain and

in approximately 1998, he had laproscopic back surgery performed by

Dr. Steingard, to remove debris from the lumbar vertebrae.

In May of 1999 he was diagnosed with cellulitis in the left arm and

placed on antibiotics and the condition abated. In March of 2001,

his fatigue and pain symptoms were so severe that we arranged a

diagnostic evaluation at the Mayo Clinic in sdale lasting

approximately three months and which was basically inconclusive;

however, they did diagnose possible poor oxygenation due to

inflammation in the lungs and possibly latent asthma. They

prescribed inhalers which he no longer uses (Flowvent and Seravent)

as there was no improvement after 6 months. The physicians at Mayo

did not believe in the concept of fibromyalgia and offered no

explanation for the fatigue. They also identified a dilated

ascending aorta which has not changed in configuration in the past

four years and which is evaluated every six months by Dr.

Rappoport. There was an ultrasound doneat Mayo in which no

pancreatic mass was identified. In June of 2001 the first of

three " acute attacks " of possible speticemia occurred with extreme

chills, shaking, hiccups, fever, and delirium. He was extremely ill

and his blood pressure couldn't be measured, but he appeared

septic. We were out of the country and, therefore, good medical

attention was not available. He was treated with oral antibiotics

and the attack subsided after several days. It appeared that

after that event, he entered another phase of the disease. His

symptoms on a daily basis became even more pronounced although he

would still have occasional good days. His hands and feet

occasionally became mildly jaundiced although his scleara was never

yellow and his skin appeared " waxy " and frequently clammy. His

ability to tolerate heat changed so that he was only comfortable in

a temperature of approximately 65 degrees or cooler although he did

not appear to run a chronic fever. He began to sweat

uncontrollably, so much so that his clothes would be soaked to his

body in temperatures of approximately 70 degrees. He still had

pronounced digestive problems that he could not solve without

laxatives and he continued to eliminate things from his diet. i.e

brocolli, cauliflower, and milk products (thinking that he was

lactose intolerant). The fatigue, generalized pain and digestive

issues were still the most prominent symptoms and he became

increasing anxious and claustrophobic. His joint pain was severe

and it was recommended that he have a knee replacement. He

continued to seek medical help from Dr. er, general

practitioner, but was unsuccessful in obtaining a diagnosis except

chronic fatiguue syndrome. In January 2004, he had a hemmorage in

his eye and lost part of his vision in one eye. In March 2004, he

was scheduled for a follow-up of the dialation of the ascending

aorta, an angiogram was done and replacement of the aorta was

recommended. We sought a second opinion from Dr. Rappaport,

cardiologiost at the Arizona Heart Institute, who indicated that it

was stable and surgery was not indicated at this time. In May and

October 2004 he had a large basal cell carcinoma removed from his

face three times in the same location. Meanwhile extreme fatigue

continued accompanied by uncontrolled sweating, itching, digestive

problems and redenned skin on the face neck and chest. This past

September of 2004, Dr. Rappoport cardiologist, suspected

gall bladder and ordered the ultrasound and he was also seen by

another internal medicine physician, Dr. Dan Featherston, who

ordered an abdominal CT scan and both physicians found the

pancreatic mass. His CT was examined by four surgeons specializing

in Whipple surgery and each thought that the mass was an

adenocarcinoma. Dr. Featherston felt that the uncontrolled sweating

might have been due to oxycontin taken for pain and placed Gene on

morphine and most of the sweating subsided. Dr Rappaport referred

Gene to Dr. Arthur Shiff, gastroenterologist at the Mayo Clinic,

sdale who recommended an endoscopic ultrasound for more

information and a possible biopsy. While waiting for that

procedure, Gene suffered his most critical " septic attack " on

October 28th when he suddenly experienced extreme chills, shaking,

no fever initially, weakness and delirium. He was taken to

sdale Health Care North and was identified as septic due to

infection of unknown origin, also displaying a light pneumonia in

the upper right lobe, placed on IV antibiotics for 24 hours and

released to home directly from ICU. On November 4, 2004 the

endoscopic ultrasound ws performed by Dr. Nugyen at Mayo Clinic who

described " a complex cystic mass " in the head of the pancreas which

was very suspicious for malignancy. Due to the extensive vessel

involvement around it, he was unable to get a safe pass at a

biopsy. In October 2004 Gene was also seen by Dr. Isaacs,

oncologist, for possible post-surgical treatment and a CA9-19 was

ordered with results at 35. His weight was approximately 195

pounds. On Tuesday, November 16, Gene was scheduled for a Whipple

to be performed by Dr. Larry Koep, which could not be accomplished

due to vessel involvement; however, the gall bladder and celiac

ganglion were removed and the celiac nerves severed. Dr. Koep

believed that the mass was malignant, and was remarkably surprised

when the pathology report indicated that the tissue was not

cancerous. The gall bladder biopsy showed " chronic cholecystitis "

and the pancreas core biopsy showed " chronic pancreatitis, duodenal

mucosa with inflammation and reactive atypia and negative for

neoplasm " . The pathology was reviewed at the morning QA slide

conference of pathologists at Banner Good Samaritan Hospital and

they all concurred. After the surgery Gene began to experience

massive diarrhea and began losing a pound a day. He was seen at the

Mayo Clinic by Dr. Schiff, who placed him on 2.5mg Lomotil tabs for

diarrhea and Lipram-CR10 10000 capsules as enzymes for digestion.

Initially Gene appeared to be recovering from the surgery well,

tolerated a light diet, and no longer needed medication for pain

from the surgery but continued to suffer from repeated

claustrophobic attacks and massive diarrhea. When he ate, he would

have diarrhea approximately 15 minutes after eating. He began to

have lower abdominal pain that ran across the abdoman just below the

naval (that pain is still present). His weight dropped from 195

pounds to 175 in approximately 20 days after coming home from the

hospital even though he tried to eat. He took Lomotil to control

the diarehea starting with two pills every four hours and then

dropping to one. He was occassionally able to maintain food for a

period of approximately a day but his digestive tract was very

fragile and alternated between constipation and diarrhea. Meanwhile

he continued to lose weight, felt " terrible " all the time, was not

thriving. In order to get his some nourishment while waiting for

our appointment with the gastroenterologist, Dr. Burggreen,

December 4, 2004 we found a naturopath who installed a picc line and

gave him vitamins and minerals in saline daily for three weeks. He

began to improve marginally, was better hydrated, and his digestive

tract began to stabelize somewhat. His CA19-9 was measured at 50 on

December 6, 2004. He continued to be absolutely exhausted and still

felt " sick " all the time. His color was poor, grayish in

appearance. He did not appear to be running a fever but was either

very hot or very cold regardless of the ambient temperature and the

anxiety attacks and claustrophobia were present. He sometimes

seemed to have poor balance, difficulty concentrating and

interrupted thought processes. He also had trouble spelling and

writing, and seemed very confused with delayed comprehension. These

symptoms might have been due to the Lorazapam prescribed for the

anxiety. The anxiety attacks occurred several times daily, caused

him great distress and were a relatively recent symptom, with the

first one occuring the weekend before the attempted Whipple.

By mid December, he was starting to become jaundiced and felt even

worse all the time, with severe exhaustion and low abdominal pain,

especially after eating. Weight droppped to 164 pounds. His CA19-9

score was 6065 on 12/23/04. On January 6, 2005 an outpatient ERCP

was performed by Dr. Burggreen and a No.# 10 stent was placed

in the biliary canal. Brushings were obtained and the lab report

showed abnormal cells but no malignancy. On January 7, 2005 he went

to the ER with very distended abdoman, very ill with flue-like

symptoms and pain with no initial fever. The CT scan revealed a

subhepatic abcess measuring 6.2 x ll.2 centimeters and 180 cc of

puralent fluid were drained with no evidence of malignancy. A JP

drain was inserted into the abcess and he was placed on IV

antibiotics ( levaquin, 500 mg., flagyl 500 mg.,) His culture of

the abcess indicated e-coli present. Some ascites were present.

After four days in the hospital, he experienced severe neck pain.

CT scan of the neck was unremarkable. January 12, his CA 19-9 was

145. He remained hospitalized until January 15, 2005 and was

discharged with the JP drain and it continued to draw approximately

30 cc every 12 hours. Fluid was alternately avacado green, and

tan. On January 23, 85 cc of very dark green/brown fluid was

collected in 16 hours. Gene felt consistently weak with constant

lower bowel pain occuring approximately 20 minutes after eating and

lasting approximately 1 1/2 hours. He also experienced occassional

heat flashes. On January 20, 2005, his CA19-9 was 29. Also on

January 23, he had finished the levaquin the previous day and was

continuing flagyl but experienced fever and chills. Dr. Burggreens'

office provided a new prescription for levaquin and flagyl. On

January 27, while on oral antibiotics, Gene spiked a fever of 103.9

degrees, returned to ER and was admitted. PICC and JP drain lines

were cultured. Blood culture showed staph infection and drain was

infected with bacteria and yeast. On January 31, 2005 the CT of

abdoman indicated significant ascites and on February 1, 2005, a

paracentesis was performed to remove 1200 cc of pale yellow fluid

which was cultured and not shown to have malignancy or infection.

Also on February 1, a fentanyl patch of 50 mg was instituted to

control pain in addition to the 30 mg. Morphine instant release

before each meal with enzymes (Creon 20). February 2, there was

continued evidence of ascites in abdomen and doctors pulled the JP

drain and PICC line. February 3, installed new PICC line for home

antibiotics and started Lasix 20 mg. for ascites 2x per day. Gene

was discharged from the hospital.

Febaruary 4, IV antibiotics had been administered at home for 18

hours (Unasyn every 8 hours and flagyl one time per day) when Gene

mounted a fever of 102.5 degrees. Again he was advised by Dr.

Burgreens' office to report to ER and Gene was admitted and started

IV antibiotics. WBC was 14.7 and dropped to 8.1 on February 5.

Billirubin was 5.0 on 2/4 and 4.8 on 2/5. CT scan of the chest,

abdomen and pelvis, showed change in lower bowel with possible

partial large bowel obstruction and large amount of ascites. Dr.

Spooner, infectious disease specialist, was consulted and

ordered an echocardiogram which showed possible 0.7 cm mass attached

to the posterior leaflet tip on chords of the aortic valve which was

confirmed as vegetation by a trans-esophageal echocardiogram on

February 6th..

February 6, biliary stent had failed and was removed and an

unsuccessful attempt was made to replace it. The biliary duct was

completely blocked. Lab report on biliary stent showed atypical

cells present and fungal organism consistent with Candida species

but no malignancy. February 7, another stent was inserted by ERCP

although the top curled into the gall bladder duct. Gene's t weight

had dropped to 163 pounds – he had lost 45 pounds since Sept. to

date. He was discharged on February 9 and placed on IV antibiotics

at home (unasyn every 6 hours for vegetation for six weeks) and oral

flagyl 500 mg 3 x per day and diflucan 200 mg 1x day for yeast) in

addition to previous medications.

February 11th, Gene jaundiced again. Weight was 156 pounds – a

loss of 50 pounds since Sept. 2004. On Feb. 12th TPN was initiated

at home through PICC line on 24 hour basis. IV Unasyn continued

every 6 hours. Outpatient ERCP performed to replace stent on

February 14. Dr. Burggreen inserted another stent next to the

previous one and was able to get it up higher into the liver. TPN

including lipids was initiated and after one week on TPN with

calories of 2366 per day and oral intake of approximately 2500

calories per day, weight has dropped four pounds to 151. Total

weight loss since September of 56 pounds.

It was discovered that he was able to consuem liquid protein drinks

better than solid food so he made the decision to eat only liquids (

Resource drinks, Scandi Shakes, Elecare, Benecalorie, etc) After

two weeks on liquids in addition to the TPN he had gained five

pounds and was starting to feel better. He was able to go out and

even went horseback riding. During the 5th wek of the unasyn IV

infusions, which was the first week of March, the T. Biliirubin and

D Bilirubin began to climb from 2.5 to 4.1 and higher and he began

to jaundice. On March 15 he became septic with symptoms of

delirium, fever of 102.9, and rigors. He was taken by ambulance to

sdale Health Care North as Good Samaritan was not accepting ER

patients. In the ER the decision was made to replace the PICC line

in left arm in case it was the source of infection ( subsequent

culture indicated that the line was not infected). New PICC line

was placed in right arm.

He was placed on normal saline IV, given a 500 ml bolus and 100

ml/hr. Total bilirubin was 5.5 and direct bilirubin was 4.7.

Alkaline phosphate was 1273, AST 65 and ALT 74. He was given a gram

of vancomycin.

As his gastroenterologist, Dr. Burrgreen was out of town, we

utilized Dr. Leon Rigburg and Dr. Jay Mellen as GI specialists.

They recommended against another ERCP to replace the stents because

they had failed so many times before and instead recommended a

purcutaneous transhepatic catheter to drain the liver as a scan

indicated that the bile duct was almost totally obstructed. The SP

PERC Biliary int/ext drain was placed on 3/18 by Dr. Gavin

Slethaug. One stent was pushed through and the other stent was

impossible to remove during that procedure. Bilirubin numbers began

to come down the next day, dropping to 3.7.

We were also referred to Dr. Burge for infections diseases. He

felt strongly that the other stent should come out as it might be

the source of infection and an ERCP was done on March 21 to remove

it. Half went to cytology and half to microbiology. Cytology

report indicated negavite for malignancy, and showed reactive

cellular changes associated with repair as well as fungal organisms

morphologically consistent with candida species.The wound culture on

the stent indicated rare gram positive Cocci in Chains, and rare

WBC's. Moderate growth of enterococcus faecium and light growth of

enterobacter cloacae. Also identified were light growth of

Coagulase Negative Staphylococcus considered normal skin flora. Dr.

Burge discontinued Unasyn and began IV vancomycin and Primaxin. He

ordered another echocariogram in which the vegetation on the aortic

leaflet was still visible. Gene was discharged with orders for

infusions of Invanz 1 gram once daily. Dr. Irma Nistor,

radiologist at SHC North did a comparison study between the original

CT scan done in October by Simon Med with the most recent one done

at SHC North and concluded that the pancreatic mass appeared to be

unchanged; however, she noted an enlargement of the wall of the

ascending and proximal transverse colon possibly due to vascular

involvement and some focal areas in the liver.

After being discharged from the hospital, he was very ill, unable

to eat consistently,

feeling like he has the " flue " all the time. His color is greyish,

and he is exhausted. He periodically exhibits a light rash on his

arms, red nose, chapped lips, and dry itchy skin. He alternates

between cold and hot temperatures all the time but exhibits no

fever. He began to eat solid foods again.

The biliary catheter seemed to be functioning for drainage as

approximately 150 -200 cc's of bile was removed daily. The bile was

greenish in color and frequently contained a substantial amount of

tissue and may be viscous in consistency. However, even after good

biliary drainage had been obtained, Gene did not improve.

On March 28, 2005. Gene saw Dr. Spooner who indicated that the

antibiotics chould be changed to Maxipime and Zyvox by IV 2 times

per day for 4 weeks. He also ordered oral Bactrim 800/160 2 x per

day and Diflucan 100mg 1x per day. They started on 3/29.

On April 1, 2005, his trans-hepatic biliary drain failed and bile

began coming out of the area where the drain was inserted in his

skin and he was taken to Good Samaritan Radiology and the drain was

replaced with a slightly larger one. The radiologist indicated that

the drain appeared to have become clogged. Afterwards, the new

catheter appeared to drain substantially and we removed

approximately 250 ccs of fluid three times per day.

On April 7th, Gene began to deteriorate significantly, was unable to

eat and began vomiting. He appeared to be slightly jaundiced. He

continued vomiting and was unable to eat on Thursday and Friday. On

Thursday, April 8th, he had pulled out some sutures on his trans-

hepatic drain and went to radiology at Good Samaritan to have it

resutured. At that time, the radiologist indicated that the

drain was still in the correct position and draining some. Friday

evening, his fever began to rise and measured between 99.8 and 100.4

throughout the night.. Dr. Dennert, Gastroenterologist,

recommended that he be admitted and evaluated to determine adequate

drainage and source of fever. During the 48 hours period between

April 7th and 8th, only 120 cc's of bile fluid were drained and the

appearance of the liquid was dark, reddish brown with significant

debris. On April 9th, he was hospitalized with low grade fever and

a clogged transhepatic drain. On April 11th, the drain was replaced

with one of the same guage and a MRCP was done. Gene improved

immediately after the drain was placed.

On April 12th Gene was seen by Dr. on at the Mayo Clinic,

sdale who surmised that the major issue might still be cancer

or possibly autoimmune pancreatitis. He ordered the original tissue

blocks from the open biopsy sent to pathology at Mayo and reordered

blood work on autoimmune pancreatitis (previous tests for this

disease were negative.) No results have been received.

On April 14th, Gene began to feel nauseous again and began vomiting

on the 15th. The bilirubin count had climbed from 1.9 to 3.1.

Alkaline Phosphatase had climbed from 677 to 778.

He will be seen in radiology on the morning of April 18 to try to

reposition the drain and to inject dye to determine the amount of

drainage in preparation for his trip to UCLA. The radiologist has

already recommended a second transhepatic drain. No decision will

be made until after the UCLA consult.

Current medications:

Lasix 20 mg. 2 x day

Protonix 40 mg.1 x AM

Paxil 20 mg. 1 x AM

Diflucan 200 mg. 1 x day (for fungal infection on the last stent -

discontinued)

Levisin before each meal

Aldactone 50 mg. 2 tabs. 1 x in AM

Creon 20 before each meal

Morphine (MSIR) 30 mg. Before each meal or for breakthrough pain

Fentanyl patch 100 mg.

Lactinex 3 x day

Zelnorm 6 mg 1 x day

Maxipine IV 2 x per day

Zyvox IV 2x per day

Actigall 300 mg. 3 x per day - new

TPN daily for 16 hours -

New prescription for Pancreatin

Also uses on demand

Phenergan tabs 12.5 mg

Phenergan suppositories 50 mg

Compazine suppositories 25 mg

Compazine tabs

Lomotil 2.5 mg.

Imodium 2 mg

Ativan1 mg

Soma 350 mg

Has new prescription for Zofran 8 mg for nausea

Questions:

Our best impression is that this condition has been systemic and

long standing and has culminated in very serious complications

within the past two years. His GI specialists are now thinking that

this is not pancreatic cancer and are looking for other causes.

1. Could this have been an initial invasion of fungus,

bacteria, virus or microbe which caused the scarring of the pancreas?

2. What other types of testing could we do to look for unusual

infections?

3. What about sackievirus?

4. How do we prevent infection from the biliary dressing?

5.

[Guest guest]

Has your father ever been tested for lupus?

[Guest guest]

To Gene's daughter / son,

I am so sorry about the ordeal that your dad is going through. I

really have nothing to offer you in the way of advice as it seems

that you have a team of experts on the case that is looking at

almost every possibility under the sun.

The only thing that I can think of.....is to suggest that you dad be

seen by a rheumatologist if he hasn't already. The joint pain,

fever, etc can be consistent with many types of autoimmune

rheumatologic disorders including vasculitis, lupus,

ehlos-danlos syndrome, connective tissue disease,

scleroderma, collegen-vascular disease, etc. The fact that one

of the doctor's is working him up for autoimmune pancreatitis

makes me think that there could be other autoimmune

processes going on. Like thyroid disease too. But I would think

that the blood tests and other procedures would have already

been done in his thorough workup. I also think of Hepatitis C

infection only because of a friend on this board who is being

treated for this after having symptoms for years if not decades.

We are sensitive to this disease being overlooked but again, I

would think that this was tested for early in the course of your

dad's illness.

Other than that........nothing that he is going through is similar to

my experience with pancreas problems. So I cannot comment

very well on what you wrote.

I hope that you are able to get to the bottom of things. I am so

sorry that your family is going through this.

Laurie

[Guest guest]

It is amazing you would ask that. We just came across a lot of

research leading to the possibility of autoimmune pancreatitis that is

caused by systemic lupus. Our next step is to try and find a doctor in

arizona that has enough experience in diagnosing lupus and treating

it. But we really do not know where to go with anything but he is down

60 lbs and cannot eat or drink is on TPN all day and still nauseated

and throwing up (basically nothing comes up) he is just miserable and

in pain. Thank you for your input.

Danae

>

> Has your father ever been tested for lupus?

>

[Guest guest]

Has your Dad been tested for Hepatitis C? It was the why for my deteriorating

health and pancreas issues. You can have allot of symptoms when the virus is

active. I feel like the flu all the time too. Hope you find the why soon.

Love,

w

Wisconsin

__________________________________________________

[Guest guest]

Has your father been tested for sprue/celiac disease?

Crystal Galloway