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MARY DIPAOLO

Mary DiPaolo – August 2006

Background

We had just moved from Key West Florida, where I was born and raised, to a really nice house out in the farmlands of West Florida. I have two children; my oldest is Michelle, who has my grandson Glynn Raymond Archer IV. They still live in Key West, but come up to see my husband (their Father) every few months. I also have a son, Anthony, who lives about 1/2 an hour away from me in one of my rental homes. He has a son, Tre’ Anthony who just turned a year old last week. My husband, Dennis and I have been married for over 37 years and he has been my savior throughout this time. He changed the bandage over the feeding tube and cleaned the site and redress it. He is my Angel.

Diagnosis

I was diagnosed in January 2005 at the age of 54. It was not a clear diagnosis as I had to repeat the CT Scan twice and both times it came back inconclusive. I had been told the prior month that I had a mass in my pancreas, but it was totally enclosed within the head of the Pancreatic duct. God was with me all the way, because when they sent it away for biopsy, it came back as a BENIGN tumor. I did not have to chemo or radiation and I thank God for that every day.

What took you to the doctor in the first place

When we moved up to the Tampa Florida area, both my husband and I went to Dr. Jacobson as our primary physician. This was in July of 2004. Dr.J. noticed that the left side of my mouth was drooping somewhat, so he sent me for tests for a stroke. Come to find out I have had 3 strokes and didn’t even know it. After that was confirmed, he had every test in the world performed on me, but no one could really read the blood test, other than that I had something by my pancreas.

How you were told, how you told loved ones

Actually, I wasn’t told until after the Whipple Surgery, because the tumor was inside the Pancreatic Duct. When they sent it off for biopsy I was still in intensive care at the hospital. That evening my surgeon came in and told me the results, that it was cancer, but it was benign. I got my husband to call my son and daughter and my two brothers to tell them. They just couldn’t believe how lucky I was.

When/how you learned “the statistics”

At the same time that my surgeon gave me the diagnosis, he explained that it is very rare, the type of cancer that I had. He told me that there was a 1% chance of that happening, but explained to me the full extent of the surgery and that the recovery would be long and painful. He wasn’t kidding.

Your initial response to diagnosis, and that of your family/friends

We were all so thankful that I didn’t have to undergo Chemo and Radiation that none of us realized what a toll the surgery would take on my body and mind.

What facility; what primary doctors

Dr. Walsh, another doctor that I had seen was instrumental in getting me to the right Surgeon, Dr. Michael Albrink. He is a brilliant surgeon and a true southern gentleman. The operation was at Tampa General where he is an Attending.

Surgery

The surgery was a Whipple Procedure, where he removed my gallbladder, spleen, the head of the Pancreas and part of my stomach. Then reconnected everything that was left.

Experience (physical, emotional)

I doubt that I can put into words the emotional experience of being in that hospital. Suffice it to say that I would not let my husband go home until I knew which nurse would be on duty that night. As far as the physical experience it was something I never want to go through again.

Side effects/complications

The worst side effect, if you can call it that, was that I had no appetite at all. They had me on a feeding tube, but even in the hospital the nurses couldn’t get it to work. But they sent me home with it and within a week it had fallen out and I had to go back to the hospital to have it reinserted. That happened 3 times and I got down to 84 lbs. Finally I had to demand that they put in a tube that would fit the feeding IV. After that it stayed in until February of this year.

Dietary – Exercise

I had to eliminate by trial and error the foods that I could tolerate. I was still on the feeding tube,but knew that I had to start eating more. As far as exercise, I started to garden when we moved here, so when I was able to I went back to it. It kept my mind occupied and exercised my body also.

Rediagnosis
Not yet, I go for more test this coming February (2007).
Experience

I don’t know yet.

Medical Team

My Surgeon, Dr. Albrink, and his many minions of trainees. Tampa General is a teaching hospital so I did not see the same people all of the time.

Primary Caregiver

My Husband. He took off 3 months of work to be there for me. I don’t think I could have survived the hospital if he had not come every day for 14 days.

Other Family

My daughter was with me for the surgery and for 3 days after, then she had to go home to her family and job. She is the best. She still comes as often as she can. My son came everyday for about a week, but Tampa is about an hour from where he lives and works.

Friends, Neighbors, Strangers

Several of my friends from Key West came up to see me while I was in the hospital, and I can’t even remember how many perfect strangers stopped in to give me a kind word.

Online Resources

The Pain Message site, Johns Hopkins message board and my favorite Made in Heaven Queen message board.

Books

I don’t read anymore since I had to get glasses. I miss it because I love the written word.

Attitudes

Without exception, prayers, comfort, and support.

What your doctor would say

He did say that I was a fighter. I guess I am.

What you say

The same. I wasn’t going out without a fight.

Importance of hope

Hope is one of the most important feelings, if you give it up, you might as well give up on yourself.

Importance of humor

You just can not lose your sense of humor. Even with all the things going on in that hospital, I could still see the humor in it.

Importance of spirituality

Without God in our life, our life means nothing. God was with me every step of the way. He is with me now. I feel sorry for people who do not believe in him.

Advice to other patients

Stay strong and fight this disease, you can do it.

Advice to primary caregivers

To my Husband, God Bless you.

Advice to well-meaning others

Just stay positive in your attitudes, don’t make the patient feel even worse.

Thoughts

This Journey, even if it is not over yet, has changed me in so many ways. I now wake up each morning and thank God for one more day. I go out of my way to be helpful to others, as I know how it felt to be on the receiving end. I look at life through new eyes now, I think before I speak, and I take great pleasure in the little things in life.

Our science board is composed of:

James Abbruzzese, MD Chief, Medical Oncology Duke University

Markus Büchler, MD Chairman, Surgery Heidelberg University, Germany

Ralph Hruban, MD Director, GI / Liver Pathology Johns Hopkins University

Eileen O’Reilly, MD Associate Director for Clinical Research – Memorial Sloan-Kettering Cancer Center

Margaret Tempero, MD Chief, Medical Oncology University of California at San Francisco

Our Philosophy About Pancreatic Cancer

Pancreatic cancer is a serious disease. Taking an aggressive rational stance at the earliest possible time, supported by the best medical team, and treated in the most appropriate manner gives the best chance for survival.

We believe in strong patient-physician bonds, scientifically-based treatment, and that comfort can come from knowing that everything that reasonably can be done – is being done.

That the best approach is meeting cancer of the pancreas head-on and armed with the best available information.

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Genetic Testing for Pancreatic Cancer

PROPOSED: Every newly diagnosed person with pancreatic cancer (ductal adenocarcinoma of the pancreas) should receive genetic screening prior to beginning treatment – to test for germline genetic mutations in the homologous recombination DNA repair pathway, including genes such as BRCA1, BRCA2, PALB2, and others. These results, in from 12% to 17% of pancreatic cancer patients, suggest that treatment that includes DNA cross-linking agents such as platinum compounds or PARP inhibitors may be superior to standard best practices therapy.


OFFER: Color Genomics offers a 30-gene cancer panel for $224 (normally $249) when the Promotion Code “PANCREATIC” is entered at checkout (price will reduce upon entering this code). This is a physician-ordered saliva kit. Click Here for more information

RATIONALE: The age of precision medicine in pancreatic cancer is approaching … [MORE]

This year an estimated 57,600 Americans will be diagnosed with pancreatic cancer. Approximately 47,050 Americans are expected to die from the disease. There are many reasons why the outcome for pancreatic cancer patients is bleaker than for most other cancer types. There are no reliable methods to detect the disease early, and there are very few effective treatment options. Which is why we are so focused on supporting research for early diagnosis.

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Pancreatic cancer is expected to become the 2nd leading cause of cancer-related death by the year 2020. There are many reasons why the outcome for pancreatic cancer patients is much bleaker than for most other cancer types. There are no reliable methods to detect the disease early, and there are very few effective treatment options.

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Pancreatic Cancer Blog

One of the observations that physicians often made when the standard of care treatment typically consisted of the chemotherapy drug agent of gemcitabine alone, was that many patients with pancreatic cancer (ductal adenocarcinoma of the pancreas) seemed to feel better after the initiation of treatment… More Here

 

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