My Research on Pancreatic Cancer

This research information is for my family, friends and anyone diagnosed. I also hope to bring to everyone's attention the underfunding and lack of treatment options. 


Having worn that pink ribbon twice, I believe there should be a fairness of medical research to all Cancers. It is very disturbing to read that there has been no significant progress in the treatment of Pancreatic Cancer. Pancreatic Cancer is currently the least funded of the major cancers – with only two percent of the National Cancer Institute’s budget devoted to pancreatic cancer research.



Just because PC is a death sentence in 2012 does not mean it has to be that way in the future. To change this, voices have to be heard. Advocacy must occur.



Where are the Phase 3 clinical trials? Why isn't there more research being done? Where is the blood test marker? Where is the Ribbon for Pancreatic Cancer??



From what I understand, pancreatic cancer is usually not even diagnosed until stage 4 because there are few symptoms before that. If it's caught earlier, it's often accidental in the course of treating something else. Pancreatic cancer is the fourth leading cause of cancer death in the U.S. Pancreatic Cancer is known as the silent killer.

  

The majority of people who are diagnosed with pancreatic cancer have a poor prognosis because by the time symptoms are obvious enough to get noticed, it has already spread to other organs(metastasized) and systems. 

The most common type of pancreatic cancer, accounting for 95 percent of diagnosed cases, is adenocarcinoma. This is a type of cancer in which the tumor forms in the part of the pancreas that makes substances involved in digestion. Adenocarcinomas are often found in the head, body or tail of the pancreas.
A small number of pancreatic cancer cases involve cancer of the endocrine cells in the pancreas. Endocrine cells produce hormones used by the body, such as insulin. Cancer involving these cells is known as islet cell tumors, or pancreatic endocrine tumors. Chances of recovery are greater for cancer involving the endocrine cells in the pancreas.

The pancreas is a gland  about 6 inches long that is shaped like a thin pear lying on its side. The wider end of the pancreas is called the head, the middle section is called the body, and the narrow end is called the tail. The pancreas lies behind the stomach and in front of the spine. 

Prognosis:

Pancreatic cancer is based on a 5-year percentage rate. The prognosis for stage IV pancreatic cancer is grim. According to the American Cancer Society, only 1 percent of all patients diagnosed with stage IV will survive 5 years after diagnosis. According to the website below, no matter what the stage, only 20% of people live beyond a year after their diagnosis and just 4 percent survive the 5yr marker.

Pancreatic Cancer Action Network (PANCAN).

This amazing organization provided one on one contact with me. I am very grateful to them. After I submitted my email someone contacted me the next day. He provided me with information that I was unable to retrieve on my own. After a one hour telephone conversation, he then sent me emails with contact information and everything that came up in our conversation. I was told that anything on the pancreas should immediately be dealt with by having an MRI. It is obvious that our doctors are not aware of this.

I found out that remote consults are given from some of the major hospitals in our country. With your Dr's phone call, you can then send your medical information to them and they will contact you with an opinion. Some of them offer second opinions for pathology; in other words, to confirm the diagnosis and staging of the disease. Others offer medical second opinions, where a physician would evaluate a patient’s proposed treatment plan and potentially offer other options.

Advocacy: Since there are so few survivors,  PANCAN is relying on family members to pick up the fight. Pancan was founded in 1999, and before that there was no movement for pancreatic cancer. Now they need people to raise their voices and put a spotlight on pancreatic cancer so they can change the facts of this cancer.

"And that’s exactly what PANCAN is hoping to do – change the playing field. 650 advocates for the foundation met on June 26th(our birthdays) with congressmen and senators to discuss the Pancreatic Cancer Research and Education Act – a bill that would force the National Cancer Institute to create a strategic plan for pancreatic cancer. This landmark legislation will direct the National Cancer Institute to develop and fund a long-term comprehensive research strategy for developing early diagnostics and better treatments to increase survival rates. In addition, we will continue to play a leading role in the Deadly Cancer Coalition, joining with the advocates of other overlooked deadly cancers to increase the attention given to the patients facing these diseases."

Read more:  http://www.pancan.org/

Clinical Trials:

Phase I trials are testing a drug that has recently started on its path toward potential FDA approval. Therefore, dosage, safety and side effects are tested in a small group of 20-40 patients. Phase II trials are still testing dosage, safety and side effects, but are also testing the effectiveness of the trial drug. These trials usually enroll 25-100 patients who may or may not have had prior treatment. Finally, phase III trials enroll several hundred patients which are randomly assigned to either the new treatment or the standard of care treatment. This is done to compare the efficacy of the new drug against the standard drug. Most Phase III trials are for patients who have not yet received any drug treatment. It is mostly recommended that you enroll in Phase 3 trials because it has been determined by that phase to by safe.

Looking over the last 10 years almost all the clinical trials in the United States were withdrawn or terminated. In my search of the Chicago area for current clinical trials, there are only two Phase 3 trials being offered, using the old standard of care drugs, for stage 4 pancreatic cancer. A few Phase 2 and mostly Phase 1.  The newest form of treatment called Folfirinox is currently not being offered in any Phase 3 trials in the United States. 

Treatments options for Stage 4 Pancreatic Cancer:

Adapted from the NCI Cancer Bulletin.

A four-drug chemotherapy regimen has produced the longest improvement in survival ever seen in a phase 3 clinical trial of patients with metastatic pancreatic cancer. Patients who received the regimen, called FOLFIRINOX, lived approximately 4 months longer than patients treated with the standard of care used for the last 15 years called gemzar or gemcitabine. (11.1 months compared with 6.8 months). This trial was conducted at 48 hospitals in France and published in the May 12, 2011, New England Journal of Medicine. For more information: 

http://www.cancer.gov/clinicaltrials/results/summary/2011/pancreatic-chemo0611

The chemotherapy options are few and can have an impact on quality of life. Your Dr. should discuss with you the best protocol so that you do have a decent quality of life during your remaining months.

Another option is to not do any treatment and immediately go into hospice care at home. This was discussed for days between my husband and I. It is not an easy conversation but I believe is necessary.

I came across an interesting article written by a physician on this subject. Doctors will do anything to keep some patients alive, but they take a different approach when it comes to their own lives, according to USC Medical School's, Ken Murray.

How Doctors Choose to Die?!

  

When faced with a terminal illness, medical professionals, who know the limits of modern medicine, often opt out of life-prolonging treatment. An American doctor explains why the best death can be the least medicated – and the art of dying peacefully, at home. 

Read more: http://www.guardian.co.uk/society/2012/feb/08/how-doctors-choose-die