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Ask an Expert Feature on Facebook

July 2012

From: Cami Lynn: My question is how often does information get shared between the hospitals and the organizations that a waging a war against pancreatic cancer? I question because a 15 year old boy lost his battle after 6 months on July 6th, 2012 and he was being treated by St. Jude's. They stated they had not seen a case since 1996. What is ironic is that a friend's son, Denali Botolino was fighting pancreatic cancer for two years and he died at 11 this June? I would like to know that information is being shared in order to have an accurate pulse on pancreatic cancer.

From The Lustgarten Foundation: Dear Cami,

This is a very important question and one that the medical community has been struggling with for a while. To address this issue, the Office of the National Coordinator for Health Information Technology (ONCHIT) was developed in 2004.  Its mission is to integrate all US electronic health records into a single system. 

While this may seem like a straightforward goal, the process of integrating all hospital records has been daunting.  Since the US has a private medical system, each hospital has implemented its own individual systems to track patient records (80% of which is still paper files). Agreeing on what information should be entered into computer records and getting all the computer systems to communicate with each other has taken an enormously long time.  In order to jump start the process, in 2009, the HITECH act (Health Information Technology for Economic and Clinical Health Act) appropriated nearly $30 billion to help healthcare providers accelerate the conversion of paper files to Electronic Health Records.  This is the first critical step to integration of US health records.  It is predicted that by 2019 80% of patient information will be available electronically.

From Lacresha: ‎"Why are some nurses so reluctant to give frequent doses of pain meds to the patient. I would like to see more Education as to pain management for the patient diagnosed with Pancreatic Cancer, now hospice was phenomenal but prior to hospice my aunt needed Dilaudid IVP almost hourly she said the "wrap around" pain was unbearable. We were able to schedule the nerve block a couple weeks before she died but she still needed pain meds, no one with this diagnosis should suffer."

From Nadine: "My dad was diagnosed with pancreatic cancer Feb 11, 2011 and was given 3 months to live. The doctor said most people have about a year however considering my dads heart and diabetes he would only probably make it 3 months. Well.... he is still alive!!! His markers are in the normal range and there is no detection of the tumor when he has his scans. The doctors are still treating him with chemo because they said he still has cancer. When they have backed off of it his marker elevates. Right now his level is in the 60's. My question is why would the Dr. change his chemo to the port when things seemed to be doing ok? Ever since he has switched to the 48 hour pump, he goes into the hospital. His blood sugar has spiked to close to 600 twice and the last time he went into the hospital after his first day of chemo he thought he was dying of a heart attack! The doctors are not sure why he is reacting like that so they took the pump out and are doing regular chemo. I am so thankful that my dad is still with us however he is in pain and tired everyday. I wish there was something that could be done to elevate the pain so he can enjoy his life while his markers are good. Any suggestions?"

From The Lustgarten Foundation: Dear Lacresha and Nadine,

Pain can occur in about two thirds of pancreatic patients and while there are various options the first step is to sort out what is causing the pain.  How pain is treated depends on where it is, what the cause of it is and what pain remedies can be given along side cancer therapies.  It is critical that patients and their caregivers continuously speak openly with doctors about their pain.  What is it like?  How bad is it?  What makes it better or worse?  When does it happen?

There are several options to help manage pain including: oral medications, patches that can be worn and drugs that can be injected or given intravenously.  There are also options that go beyond drugs.  There are nerve blocks that are being used effectively in pancreatic cancers.  In addition, some patients benefit from relaxation and biofeedback techniques when done concurrently with medications.

The most important message is that there are options to help manage pain for pancreatic cancer patients and integrating these options with the decisions about how to approach the disease are critical.  Patients really need to be able to speak with their oncologists and be their own advocates to make sure that they are receiving comprehensive care and not just chemotherapy.  Additional information can be found in our “Ask the Expert” Series on pain.

From Cynthia: "My boyfriend has lost over 67 lbs. He is not eating food at all, only liquid diet. he has terrible diaherra and gas. That is it. What can we do to help him eat something?"

From Sheri: "My husband has pancreatic cancer diagnosed April 10th of this year. He is in a clinical trial at johns Hopkins and has completed 2 rounds of chemo and 5 days of intense radiation. My question is in about 5 weeks my husband begins a differen...t series of meds that will be administered through a pump over 72 hours every week, for the rest of his life, I would like to know what to expect and any tricks anyone knows to keep him as well as I can for as long as I can. He also has a lot of gas and bloating everytime he eats and any advice on what to eat or take that may help alleviate these symptoms."

From The Lustgarten Foundation: Dear Cynthia and Sheri,

Nausea and digestive problems are clearly issues that many pancreatic patients face.  Not only do many of the chemotherapies often cause nausea and vomiting, the pancreas plays several important roles in digestion.  When a person has pancreatic cancer, many patients experience an inadequate production of digestion enzymes, reducing the ability to digest foods.  Pancreatic enzymes can be prescribed by a physician and taken orally, which are typically very effective.  If weight loss is accompanied by infrequent bowel habits or diarrhea, taking these enzymes is a safe and effective way to improve nutrition that can help. 

Nutritionists can be very helpful for pancreatic cancer patients.  Each patient situation is unique and balancing the different issues and nutritional needs of the patient must be taken into consideration with regards to nutrition decisions.  These can include dietary supplements, appetite stimulants or helping to select the best foods to eat and how frequently to eat them.  Some helpful tips for caregivers who want to help their loved ones can be found in our “Ask the Expert” series on caregiving. 

Early Detection

From Bonita: "My mother and my son-in-laws grandmother both died from pancreatic cancer, does this put my grandchildren at high risk? I saw similarities in both women prior to diagnosis ...both of them experienced blood pressure issues and would go to t...he ER both extremely elevated and hypotension at other mother passed 3 weeks from her diagnosis and only finally became diagnosed because of her becoming jaundiced. The other gal lived for over a year but her end was so much worse than moms with vomiting of bile and alot of pain." See More

From Rangel: "My father died of this disease last year in his lte 50's and im approching 40 this year should i get tested be cautious of any thing particular? Im a lil nervous of heridetary isues because im his only son should I be?"

From Pamela: "My father passed away from pancreactic cancer. I have type 1 diabetes,what are my chances of getting this horrible disease?"

From Elissa: "Do you recommend getting an endoscopic ultrasound of the pancreas as a precaution if pancreatic cancer runs in the family? (Mother passed away from it)"

From Cindy: "My mother passed from Pancreatic cancer as well as her brother the year before. With two close blood relatives dieing of this should I get tested? I had a CAT scan less than a week after she passed, and a ultra sound a couple years later. It has been 5 years since she passed. I want to be able to have choices if this comes my way and not find it when it's too late stage 4 and you are so sick you have no will to fight."

From Ellen: "My father passed disease? What are my chances? What are my children's chances of getting this cancer? Are there any blood tests that I can take now? Thank you for considering my questions. away 3 months from the day of diagnoses. He was 68 years old. We have been told that diet, smoking and alcohol consumption are all factors in developing pancreatic cancer. I am 47 years old. I rarely drink (maybe 1-2 a month), smoked for a few years (have not in 5 years) and I am changing my diet. My question is: what is the likelihood that I will develop this terrible disease."

From Krista: "My mom passed away of pancreatic cancer in 2010 (post whipple) it took her a year to recover and gain weight. Her tumor markers started to elevate and some questionable lymph nodes showed on PET scan. Her doctor started her on experimental chemo. With that she developed terrible ascites. Had to drain lots of fluids from abdomen. She went down hill after that. I truly regret her starting the experimental chemo it killed her liver. I want to know if it is hereditary. What tests can I take to check myself."

From Nancy: "Krista that is a great question. I just lost my brother on May 20th. He lasted 3 1/2 months from diagnosis to death and also had tons of fluid drained off his abdomen and then they finally put in a drain at the end. He was the healthiest guy you could ever meet before he got sick. I read this is hereditary and also want to know if there are any tests since he was my sibling. He too took the experimental pill once and went down hill from that along with chemo, one thing after another, terrible disease."

From Nilsa: "My mom died of this horrible disease at the age of 82. My sister died from the same thing and she was only 50. Now my nephew (my sister's son) is dying from it. Should I be worried? Is there some kind of test I can have to see if I will get it too?"

From The Lustgarten Foundation: Dear Bonita, Nilsa, Nancy, Krista, Ellen, Cindy, Elissa, Pamela and Rangel,

Clearly early detection and hereditary pancreatic cancer is a major topic for family members touched by pancreatic cancer.  Pancreatic cancer, as all cancers, is a disease caused by DNA errors, mutations, in a person’s cells.  Most of the time (in 90-95% of cases) people are not born with these mutations but rather they develop spontaneously in their cells during their lifetime.  These mutations happen just by chance.  There are things that increase the chance of DNA mutation in the pancreas that can be controlled (like smoking, diet or obesity) as well as some that cannot (like age or diabetes). 

Hereditary pancreatic cancer, which increases risk of developing the disease in family members, plays a role in 5-10% of patients. Some studies indicate that people having a one first-degree relative (parent, sibling, or child) with pancreatic cancer have two to three times the risk of developing pancreatic cancer compared with people with no family history. Some DNA mutations are known to be important in hereditary pancreatic cancer and there are tests for some of these (BRCA2, BRCA1, PALB2, p16/CDKN2A, STK11, PRSS1, ATM, and DNA mis-match repair genes).  Unfortunately there is no routine test that can detect Pancreatic Cancer early but there are screening programs for people in high-risk groups.  These screening programs monitor the pancreas routinely using state of the art imaging techniques.  This type of intense screening is currently limited to those with known syndromes predisposing to pancreatic cancer or be from a family which includes at least three affected members (one of which must be a first degree relative).  A list of sites contacts for these types of screening programs can be found in our “Interview with an Expert” series on Screening and Early Detection. 

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