Mike Roshar's survivor speech

Tonight was a great night for Pancreatic Cancer awareness.  It was the Purple Light Nationwide Vigil for Hope where over 70 communities lit the night purple to honor and recognize those loved individuals battling or who have battled pancreatic cancer.

My dad was the keynote speaker at the Milwaukee event.  Dad was diagnosed with stage four pancreatic cancer February 12, 2013.  His speech is below.  I couldn't be more proud!!!  My dad is the reason I started this blog, because when he was diagnosed, no one was giving us any hope for a stage four diagnosis.  Eight months out, we are so thankful that he is kicking butt and we celebrate every day! I could say more, but I wouldn't say it better than he says it himself!

(Sorry the video is dark)

Survivor Story #16 Low Dosage Chemotherapy

READ THE ARTICLE AT THE ORIGINAL WEB PAGE:  http://www.bastyr.edu/news/general-news/2011/10/stage-4-cancer-free-patient-thanks-bastyr-role-holistic-care

Stage 4 to Cancer-Free: Patient Thanks Bastyr for Role in Holistic Care

Sharon Hanson credits her stunning recovery from pancreatic cancer to integrative care, a supportive care center and a controversial form of chemotherapy.

Sharon Hanson

Sharon Hanson was given three months to live. She had pancreatic cancer, which carries one of the lowest survival rates of all cancers. It was discovered too late for any treatment except a last-ditch blast of chemotherapy. Get your affairs in order, the oncologist said. Write a letter to your grandkids.

The mention of grandchildren lit a spark in her. Her husband died just two months after her diagnosis, and Hanson said to herself: "My kids and grandkids are not going to lose two of us so close. That's not going to happen."

She wanted a second opinion from an integrative oncologist — someone who could advise cancer patients on both conventional medicine and naturopathic therapies. She went to Leanna Standish, PhD, ND, LAc, FABNO, one of Bastyr University's leading cancer care researchers, practitioners and teachers.

As a research professor, Dr. Standish reviewed results from all of the cancer treatment centers around the area. She'd been tracking impressive results from Ben Chue, an oncologist who ran an unconventional center in Seattle. Go see Ben Chue, Dr. Standish said.

That was five years ago. This fall, tests show that Hanson is cancer-free, a remarkable victory against one of the deadliest forms of cancer. It's all the more unlikely considering Hanson's cancer was diagnosed as stage 4 and had spread to her lungs, liver and lymph nodes. She credits her turnaround to the pioneering approach of Dr. Chue and the Bastyr graduates on his staff. They did several important things, she says.

The Party Room

First, they gave her hope. "Dr. Chue said, 'There's no limit to your time,'" Hanson, 68, recalls. "'Nobody knows. We'll try something, and if it doesn't work, we can try something else.' That's when I felt like I'd make it."

Second, Dr. Chue and his staff offered a welcoming environment that recognized the connection between mental and physical health. His practice at the time on Seattle's Capitol Hill greeted patients with bamboo, warm colors and designs informed by feng shui (last spring Chue opened a new clinic, Lifespring Cancer Treatment Center, in the Eastlake neighborhood). Treatments were given in a light-filled a space known as "The Party Room," where patients gathered to share stories and notes and frequently laugh. The relaxing, supportive circle made Hanson's weekly appointments there her favorite days of the week, she says.

The naturopathic physicians on Dr. Chue's staff also provided botanical therapies to help Hanson deal with side effects and boost her immunity. She took glutamine to protect against nerve damage. She took cold-pressed sesame oil to raise her platelet counts. Hanson didn't feel the need for acupuncture or yoga to deal with pain, but many patients found them helpful.

Low-Dosage Chemotherapy

Finally, and most controversially, Dr. Chue administered chemotherapy in much lower doses than most cancer doctors use. "Traditional chemotherapy uses the highest dosage a person can stand," he says. "But you have to wait for a person to recover or you'll kill them."

Chemotherapies were first developed for chemical warfare, after all. They attack healthy cells along with dividing tumor cells, leaving patients with significant side effects such as nausea, vomiting, diarrhea, hair loss, reduced immunity to disease and even heart complications. So patients typically receive treatments no more than every three weeks.

By contrast, Dr. Chue gives patients like Hanson doses every week, but at one-half or one-third the usual dose. He's found that patients experience much milder side effects and are able to receive more treatment in total.

"Because we're not destroying the immune system with high-dose chemotherapy, it can continue to function to help fight the cancer," he says. "It also lets us give doses more frequently. That frequency turns out to be terribly important."

Dr. Chue began using the approach 14 years ago, before clinical trials had studied it. Other oncologists were intensely skeptical. Since then, Dr. Chue's method has found widespread acceptance at cancer centers, says Dr. Standish.

"In the past, he was ridiculed for it," says Dr. Standish. "But it's what many of us now believe is the best way to do chemo. It's become a common method."

The Value of Hope

Hanson credits the low-dosage chemo, combined with Dr. Chue's integrative care, with saving her life. Today she enjoys living in Shoreline near her two children and two grandchildren. She helps run the family's longtime hair salon in Bellevue. She knows that not all cancer patients are as fortunate as her, but she believes they can benefit from the approach that served her so well.

And as Bastyr works to reshape cancer care through its Integrative Oncology Research Center(BIORC), it is looking to learn from patients like Hanson. BIORC combines chemotherapy with naturopathic therapies such as botanical medicine and acupuncture, and it's in the midst of a $3.1 million clinical study with the Fred Hutchinson Cancer Research Center to compare integrative cancer treatment with conventional care. Another new study of medicinal mushrooms is expanding BIORC's scope to include prostate cancer along with its current focus on breast cancer. In all of this, Hanson's story illustrates an important point about health and hope, says Dr. Standish, BIORC's medical director.

"The last two generations of conventional doctors were taught to give statistics and timeframes," she says. "They're taught not to instill hope. The whole idea is to consider advanced-stage cancer a doomsday diagnosis and avoid giving patients false hope."

But what if there's no such thing as "false hope"?

"Hope is hope," says Dr. Standish. Whether rational or not, it can give patients the will-power necessary to return to health.

Healers have a responsibility to tell patients when they are dying and help them prepare for death, she says. But an integrated mind/body perspective, she adds, allows a doctor to recognize that Hanson's determination to survive for her grandkids matters, no matter how sick she is.

Emotional Reunion

In August 2011, Standish and Hanson met for the first time since their life-altering visit five years ago. On a balmy summer morning, they embrace with a hug and sit in Dr. Standish's office at Bastyr's campus in Kenmore to catch up. Sharon's son Matt, who accompanies her to all her doctor's appointments, joins them.

"I think you realize what an extraordinary case you are," Dr. Standish says.

Hanson nods, her face beaming. She wants everyone to know about the potential of integrative therapies. She encourages anyone diagnosed with cancer to see an integrative medicine specialist before committing to a treatment plan.

"We need to seek out every patient that has been diagnosed," he says. "There are more integrative ways of treating this disease rather than big doses of chemo alone. We want to get that word out."

Matt Hanson has become a volunteer regional leader of the Pancreatic Cancer Action Network to help reach other pancreatic cancer victims.

After the conversation, Hanson toured BIORC's facility on campus. She learned about the approach similar to Dr. Chue's, which understands that patients require support for their spirit and mind along with their body.

As she met the staff, she eagerly recounted her story. Three months to live. It had spread to my liver and lungs. That was five years ago. Now I'm cancer-free.

READ THE ARTICLE AT THE ORIGINAL WEB PAGE:  http://www.bastyr.edu/news/general-news/2011/10/stage-4-cancer-free-patient-thanks-bastyr-role-holistic-care

A Really Amazing Article on Confronting Dismal Statistics

Do yourself a favor, if you have been devastated by seemingly impossible survival statistics, take the time to get through this article by Stephen Jay Gould.  The language is a bit scientific, but the message is truly inspirational!   The link to the original website is:  http://cancerguide.org/median_not_msg.html

The Median Isn't the Message

Prefatory Note by Steve Dunn

Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo's Smile, The Mismeasure of Man, Wonderful Life, and Full House.
As far as I'm concerned, Gould's The Median Isn't the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, "the statistics don't matter," and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn't the Message is reproduced here by permission of the author.

---

The Median Isn't the Message by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain's famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before - lies, damned lies, and statistics.
Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," or central tendency. The mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more "real" and the only proper basis for action - if it feels good, do it - while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, "Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death."

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: "What is the best technical literature about mesothelioma?" She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard's Countway medical library and punched mesothelioma into the computer's bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn't have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that's why they didn't give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied. Fortunately (since one can't reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge - and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon's proverb.

The problem may be briefly stated: What does "median mortality of eight months" signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as "I will probably be dead in eight months" - the very conclusion that must be avoided, since it isn't so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn't read the statement in this vernacular way either. My technical training enjoined a different perspective on "eight months median mortality." The point is a subtle one, but profound - for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous "beginning of life" or "definition of death," although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard "realities," and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the "I will probably be dead in eight months" may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature's only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation's best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call "right skewed." (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn't much room for the distribution's lower (or left) half - it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn't be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn't have to stop and immediately follow Isaiah's injunction to Hezekiah - set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.
It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated.

---

Postscript By Steve Dunn

Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn't mesothelioma, but a second and unrelated cancer.
In March 2002, Dr. Gould published his 1342 page "Magnum Opus", The Structure of Evolutionary Theory. It is fitting that Gould, one of the world's most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman - but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn't The Message .

Survivor Story #15-Whipple after Stage 4

Patient Spotlights Read Bill's story. Read Bill's story from his wife, Janice. Bill Gillmore's Story Bill Gillmore and his wife, Janice, in early 2010. Bill has a clean bill of health after his surgery at the pancreatic cancer to remove an"inoperable" pancreatic tumor. In March 2009, I was diagnosed with advanced pancreatic cancer. The cancer involved the blood vessels surrounding my pancreas and had also spread to my liver. I had terminal, inoperable pancreatic cancer. This news was delivered on my 25th wedding anniversary. My wife and I were devastated, finding little hope in the death sentence I had been given. I began my chemotherapy in Houston immediately, pledging to fight against my disease. I was not ready to die. Even as life became an endless array of lab tests, chemo infusions, and doctor visits, I tried hard to plan for the future and to make my life take on the meaning it once had. At the end of my first 9 weeks of chemo, I was given good news. The cancer had disappeared from my liver, and the pancreas tumor had shrunk to half its original size. Shortly thereafter, I began another regimen of chemotherapy, and within these next 9 weeks, my body continued to respond. At the end of this second cycle my oncologist granted me a "chemo holiday," declaring that I would not be given more chemotherapy until things began to worsen. I was ecstatic, and for the summer months I walked around as if I had beaten the cancer. I talked about my future, got new clothes, lined up activities, and began to believe in things again. I told my friends, I was one of the lucky ones and that I was going to survive. However, by November, as my weight began to drop and my energy began to fade, the familiar dark cloud returned. I met with my oncologist who explained that although the chemotherapy had decreased the size of my pancreatic mass I was still inoperable, without an operation I would not survive. I again was devastated, feeling lost, hopeless and defeated. In search of more information and support, I tirelessly surfed the Internet. After reading horrifying statistics and depressing patient anecdotes, I stumbled across a website that read, "offering some hope to those 35% of pancreatic cancer patients considered to be inoperable." These words shook my inner core. Hope. The website belonged to the Pancreas Center at Columbia University Medical Center. I immediately showed my wife and called to make an appointment. I was scheduled to see Dr. Chabot for a consult in early February. I had a chance, I was going to the Super Bowl, and I was a contender. I was on my way to New York. When I arrived at the Pancreas Center, I was treated like an old friend and was immediately made to feel comfortable. Within a few minutes I was called into Dr. Chabot's office where I was introduced to Dr. Chabot. He was very personable and intent on learning everything about me, who I was beyond just my medical history. He explained that a major vein had been completely blocked by the cancer but he reassured me that he was prepared to perform the resection if I was ready to accept the risks. This was an easy decision, Dr. Chabot was able to offer me what I had thought was impossible, a chance to live. That afternoon I met with several nurses and administrators to arrange and finalize my procedure. Although there were many patients present, I was amazed at their care and attention. As I left that day and returned to Texas, I felt as if I had joined the Pancreas Center team and that I was a desired member. I was confident that my teammates would work hard to save my life. The day of my surgery finally arrived, and while the details of that day are a blur, the surgery went smoothly. As I recovered in the hospital, Dr. Chabot and his surgical team followed up diligently each day. I was surprised at the time Dr. Chabot would spend with me on these visits. The empathy and dedication that he put into my care was incredible; his sincerity put me at ease. One evening while my wife was visiting, Dr. Chabot came around to check on my progress. He said that my wounds looked very good and that I was recovering well, even better than he had expected. He then explained that the biopsy results had returned and confirmed that I was cancer free. We had won. My wife embraced Dr. Chabot as she laughed and cried. That moment will forever be engraved in my mind. Tears ran down my own face as I realized that I was one of the lucky ones, I was going to survive. Life was going to be really good. My wife and I flew home on our 26th wedding anniversary with my future as an anniversary present from Dr. Chabot and the Pancreas Center. For that gift, I will be eternally grateful. My recovery is complete. I am active—I began working stained glass, caught up with neglected yard work, went camping. I have a life. Thank you to Dr. Chabot and to all of the Pancreas Center staff. Thank you, thank you so very much. The world is a better place because of all of you. Your compassion, tireless effort, and dedication to the fight against pancreatic cancer will allow others to remain hopeful and to dream—just as you have allowed me. Read the original post here:  http://pancreasmd.org/guide_spotlights_gillmore.html

Survivor Story #14-Tumor tested for chemosensitivity

This

Posted on April 13, 2012 by admin
Posted in Uncategorized

In February 2011, Ken Baumheckel was experiencing pain in the area just above the lumbar curve in his spine. He tried treating it with lifestyle adjustments and over-the-counter analgesics.  The pain persisted, so the following month he saw his primary health care provider, who ordered an x-ray.  The x-ray revealed minor bone spurring, but nothing that should have caused such persistent, annoying pain.

After two months of seeing a chiropractor and an acupuncturist without getting relief, Ken returned to his nurse practitioner in early June and told her he now sometimes felt pain in his abdomen.  She ordered an abdominal ultrasound, which revealed that Ken’s pain was caused by a tennis-ball sized pancreatic tumor and five growths in his liver.  An endoscopic exam with biopsy confirmed that Ken had stage IV pancreatic cancer that had metastasized to his liver.

Ken learned about Robert Nagourney, MD, from a friend in the health care system and made an appointment.  During the initial consultation, Dr. Nagourney told Ken that his statistical survival rate was 10 to 30 percent and that he might not be alive in nine months.  He also explained how Rational Therapeutics customizes cancer treatment by beginning with a chemosensitivity test, called an assay.  They introduce a piece of one of the patient’s tumors to several chemicals to see which ones work best on that patient’s cancer. However, even with the insights provided by this test, Ken was looking at a coin flip chance of survival.

Fully understanding the seriousness of his prognosis, the following week Ken underwent a laparoscopic procedure to obtain a viable piece of one of his liver tumors for the Rational Therapeutics laboratory.  The assay test showed there were three chemicals that his cancer was sensitive to, and he received his first chemotherapy infusion the last week of June.  Unfortunately, his pancreatic tumor was quite large, and its location near his small intestine meant that it was pinching off the intestine at the duodenum and preventing the flow of digesting food. Intestinal bypass surgery was required so that he would be able to eat. By August, Ken had lost 60 pounds but was eating and had resumed his infusions.

Ken completed six cycles of chemotherapy.  His tumor marker (a protein in the blood revealing the cancer’s presence in the body) was 208 before starting treatment; it had fallen to 44 in November and then to a normal reading in December.  A follow-up CAT showed that his tumors were gone, and in January 2012, Ken was switched to a lighter regimen to finish off any remaining cancerous cells.

So far, Ken has regained 35 of the 60 pounds he had initially lost, feels great, and is very glad he chose to have a chemosensitivity assay test before beginning his cancer treatment.

For more information about assay testing and how it may help other patients with pancreatic cancer, please visit: www.rational-t.com

READ THE ORIGINAL POST HERE:  http://vanguardcancerfoundation.org/uncategorized/p1195/

Survivor Story #13: remission after stage 4

This is a post I found on cancerforums.net:

Hope

That is what has happened for me. I was diagnosed with stage IV in March 2011. My CA19-9 was over 140,000 and the immediate prognosis was only a few weeks to several months to live. My weight was plummeting, I couldn't eat, it had spread to my liver, and I was horribly sick. Fortunately, I got a doctor who told my wife and I that he'd fight for us for as long as we wanted to fight. His wife is also an oncologist working with clinical trials. They immediately started me on FOLFIRINOX. My markers dropped below 100,000 at the first 4 week blood test and continued to drop dramatically. Tumors on the liver and pancreas continued to shrink. For the past four months my CA19-9 has been stable around 40 (normal is <35) and last Wednesday our oncologist told us it's remission. My weight has returned, up to 165 from a low of 98. For this we are wonderfully thankful that our oncologist continued to work with us even though the weight loss and performance status (quality of life) could have led others to drop or change treatment.
So, yes, I can tell you your sister's response to FOLFIRINOX is not unique and as for what it means, I hope the same as it has been for me... More days, months, and year(s). We still have to work with the damage left by the cancer, and I'm on a maintenance level of FOLFIRINOX. What's next? We don't know. Our oncologist says we are "rewriting the book" on pancreatic cancer. I wish your sister the best and tell her to never give up.

Survivor Story #12-Stage 4 with Mets to Liver and Lungs, chemo only

From the Daytona Beach News Journal.  Read the entire article here:

http://www.news-journalonline.com/article/20120826/LIVING/308269989?p=2&tc=pg

Medical Miracle

Flagler man is pancreatic cancer-free after Stage 4 diagnosis

Florida Hospital Flagler's Oncologist Dr. Padmaja Sai has been treating Ronald Sturtevant for pancreatic cancer.

N-J/David Massey

By Lacey McLaughlin

Published: Sunday, August 26, 2012 at 3:44 p.m.

Last Modified: Sunday, August 26, 2012 at 3:44 p.m.

PALM COAST -- By the time Florida Hospital oncologist Dr. Padmaja Sai diagnoses patients with pancreatic cancer, she is usually faced with the daunting task of telling them there is little she can do.

"We don't use the word cure, and, at that point, we are trying to prolong their life with palliative care," Sai said. "We try our best, but, when it's time to say goodbye, that's the toughest part of the job."

Mammograms and colonoscopies can detect breast and colon cancer in its early stages, but no such screening exists for detecting pancreatic cancer. By the time 85 percent of pancreatic-cancer patients are diagnosed, the disease is in its advanced stages and has spread to vital organs. Pancreatic cancer kills 40,000 people per year, including Apple founder Steve Jobs and actor Patrick Swayze.

It's rare for Sai's patients to live more than than a year.

Ronald Sturtevant's diagnosis was no different. Sturtevant, 62, of Palm Coast was working as mail carrier when he started experiencing unusual pains in his lower back and extreme fatigue. In July 2009, Sai diagnosed Sturtevant with advanced Stage 4 pancreatic cancer that had spread to his liver and lungs.

His biopsy, taken at the Mayo Clinic Hospital in Jacksonville, confirmed Sai's diagnosis, and Sturtevant started saying goodbye to his two daughters and wife of 32 years, Bonita.

"We were in absolute shock," Bonita said. "We couldn't believe what were hearing. When we got home, we could barely talk or breathe."

Sturtevant closed the door to his bedroom and said a short prayer:

"God, please make sure my family is taken care of, and, if there is anyway you can make this go away, that would be really great," he prayed.

From that point, Sturtevant put fear out of his mind and accepted the inevitable. He spent meaningful moments with his family, took an early retirement and began making financial arrangements for his loved ones.

"You have to put your life in God's hands, and it takes all the pressure off you," he said. "There is nothing I can personally do to change what is going to happen."

Shortly after his diagnosis, Sturtevant began undergoing chemotherapy treatments to delay the spread of the cancer. But when he walked into Sai's office six months later, she meet him with a hug. A recent test could not detect any cancer in Sturtevant's body.

"It's very unusual," Sai said. "We really don't know why this happened."

More than three years later, Sturtevant remains cancer-free but has decided to continue chemotherapy treatments twice a month.

"We don't have enough data to know what will happen if we stop with chemotherapy treatments," Sai said. "We decided that he has a good quality of life, and we want to keep it that way."

continue reading the article here:

http://www.news-journalonline.com/article/20120826/LIVING/308269989?p=2&tc=pg

Survivor Story #11 chemo only

This story comes from the success stories on the Pancreatic Cancer Action Network website.  They are an amazing organization, and they offer assistance in many ways to both patients and caregivers.

SURVIVOR STORY: WAYNE R. PETERSON

09/06/2012

In November of 2010, I was diagnosed with pancreatic cancer, which had metastasized to the liver. There were three malignant tumors in the liver and one in the pancreas.

In late October 2010, I discovered a growth on my lower left leg that was, after an ultrasound, determined to be a blood clot. I was on blood-thinners for several years, so this should not have occurred. After further tests and biopsies, it was determined that the clot was caused by the tumors in the liver. We, then, had to determine where the cancer started and we found that the culprit was the pancreas. I was very healthy at the time, so we believe that worked in my favor.

My oncologist informed us that because the cancer had metastasized, we could not do surgery or radiation, only chemotherapy. I was offered, encouraged, to participate in a clinical research trial and agreed to do so. I started with chemo for seven straight weeks in a row and a daily pill.

The treatment was very successful; by the end of 2011 a CT scan showed no tumor on the pancreas and two of the three in the liver gone completely and the third was significantly smaller. However, in early 2012, the treatments started to take a serious toll on my body. During, February, March and April I was in the hospital several times. At the end of April, my primary care doctor recommended to my oncologist that I go off chemo and the research trial. My wife and I had planned to ask to do this anyway. We were looking for quality of life as long as possible. I went into a rehab hospital for eight days to regain strength.

Currently, I am doing fantastic. I go to my cancer clinic every two weeks to check my blood and will have CT scans every twelve weeks or more often, if needed. The latest scan showed no new activity and the one remaining tumor has become even smaller.

Although, the medicine, eventually, took a toll on my body I highly recommend anyone with this condition to become involved in a research project. It may or may not help you, but will help someone down the road.

At this time, my weight has leveled off, I am eating very well, sleeping well, doing many of the things I did before the diagnosis, such as volunteering at church and being very involved in some of my clubs and councils and doing some traveling.

God is good! As soon as I was diagnosed, I dwelt on three ideals to fight this terrible disease --- good medical help, positive thinking and action, and the power of prayer. The order of importance of each of these can change daily, but to me the most, overall, item is prayer. As soon as I was diagnosed, my wife, Barbara, organized a prayer village; everyone was and is invited to join the village.

The support and love of my wife, my son and daughter and their families and all of our friends has been overwhelming. We are now into the twenty-second month of this adventure and continue to be blessed and to remain very positive.

Read the story at Pan Can here:  Pancreatic Cancer Action Network Stories

Or visit the home page at pancan.org

Survivor Story #10

This article was written one year ago.  How is he doing today?  Well, he's gearing up to walk the Purple Stride in New York and would love your donation here!

In South Nyack, a Triumph Over Cancer Against Odds

John Whitley sounds off on combating cancer and supporting others in need

• April 3, 2012

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I hope that nobody reading this ever has to hear their doctor say, "I'm sorry, you probably have about 12 months."

Originally from Yorkshire in the North of England, I have been living in South Nyack since 1988, and, until the age of 56, had been reasonably lucky health-wise until my roller-coaster ride of 2011.

In January, pancreatitis put me briefly in Nyack Hospital. That was followed by surgery to remove my gall bladder in March, and then a referral to specialists at New York Presbyterian who initially diagnosed me with bile duct cancer and recommended the Whipple Procedure—a five-hour surgery which removed part of my pancreas, part of my liver and part of my intestine. (Then the magic hands of Dr. John Allendorf put everything back together again.)

Two weeks later, I went back for my first post-surgery appointment. It had taken the operation to reveal the fact that I did not in fact have bile duct cancer, but pancreatic cancer. However, the surgery had removed 100 percent of the growth and I was introduced to Dr. Saif, a cheerful Indian oncology specialist who, at our first meeting, explained that I was not only now his patient, but "his buddy."

Any preventative chemotherapy had to be put on hold for several weeks for me to recover from the surgery, and it allowed plenty of time for all the necessary tests prior to the planned treatment.

On July 12, I went back for my final pre-chemo appointment and was led into a room where Dr. Saif, two interns and my case manager were waiting. He gently broke the news that the previous day's scan had shown that I now had a 1.8 cm tumor in my liver—the cancer had metastasized, and I was now classified as stage four. I asked what the worst case scenario would be, and he said, "I'm sorry my buddy, probably around 12 months."

You know those rides at Disney where the floor drops out from under you? That's exactly what I felt at that point.

Well, after that, things happened pretty quickly—the following day I went back to NYP for surgery to install an intravenous port just below my collar bone, and the following week, chemotherapy and participation in a clinical trial started. From day one I decided there was only one course of action: to fight, fight, fight.

The staff on the 14th floor of the Herbert Irving Building at NYP came to know me as the guy with the English accent and the constant smile of optimism on his face.

Some people remember dates of weddings, births, other special occasions; I remember September 16,2011 at 10:16 a.m. Dr. Saif called, explained that although he knew I would be at the hospital the following Tuesday, I had to know the news straight away. I could hear the excitement in his voice.

"My buddy, the scan you had yesterday showed that the tumor in your liver has disappeared to the extent where it cannot be detected—you truly are one of the lucky ones."

It wasn’t until my appointment the following week that I truly understood the significance of the news—no more pancreatic tumor, no more liver tumor, no tumors period.

You can continue reading his story here.