Survivor Story #18 low dose chemo

Five-Year Survival of Metastatic Pancreatic Carcinoma: A Study of Courage and Hope

Today's survivor story is an article published by the International Society of Gastrointestinal Oncology.  Click anywhere on the article to go to their site, or find it here:   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806805/

Five-Year Survival of Metastatic Pancreatic Carcinoma:  A Study of Courage and Hope

Ben M. Chue, MD

Author information ► Copyright and License information ►

This article has been corrected. See Gastrointest Cancer Res. 2009; 3(6): 258.

This article has been cited by other articles in PMC.

Median survival for patients with metastatic pancreatic adenocarcinoma is on the order of a mere 3 to 6 months. The following report of long-term survival of a patient with this devastating malignancy illustrates a highly unusual case study of hope, courage, and determination. It is the author’s hope that this report might in some way prove inspirational to patients battling this demoralizing disease and provide encouragement to those physicians who treat them. The concept of weekly “metronomic” dosing of chemotherapy is also discussed, as well as targeted therapy for the treatment of pancreatic carcinoma and other cancers.

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CASE REPORT

Patient A.B. is a young gentleman who presented in August 2004, at the age of 35 years, with abdominal discomfort and complaints of his food “not going down.” Initial workup included a computed tomography (CT) scan of the abdomen on August 26, which showed a 9 × 8 cm soft-tissue mass at the lesser sac of the stomach, compressing the gastric body and contiguous with the pancreatic body, with a lesion in the left and right lobes of the liver consistent with metastatic disease. The patient underwent an exploratory laparotomy with biopsy of the liver lesion, cholecystectomy, and a Roux-en-Y gastrojejunostomy as a palliative bypass. Pathology revealed an adenocarcinoma, metastatic, of unknown primary, most likely from a pancreatic primary (Figure 1).

Figure 1.

Original biopsy specimens of the metastatic liver lesion. Analysis revealed metastatic adenocarcinoma, most likely from a pancreatic primary.

The patient was treated with gemcitabine and capecitabine from October through November, suffering significant side effects and evidence of disease progression. He was then switched to gemcitabine and docetaxel on December 12. A CT scan performed on January 10, 2005, showed further disease progression (Figure 2). By this time, the patient was severely ill and debilitated, and hospice was suggested.

Figure 2.

Baseline computed tomography (CT) images from January 2005 showing a large mass at the tail of the pancreas and extensive liver metastases.

The patient and his wife visited our clinic on January 28. He was confined to a wheelchair at the time and had an Eastern Cooperative Oncology Group (ECOG) score of 4. He was informed that his prognosis was indeed quite poor, especially since no standard treatment existed for metastatic pancreatic carcinoma after failing a gemcitabine-based regimen. Nevertheless, his desire was to continue treatment. Because of his young age and our experience with “metronomic” chemotherapy dosing, he was offered a salvage regimen consisting of weekly metronomic dosing of paclitaxel 60 mg/m2, oxaliplatin 50 mg/m2, leucovorin 40 mg, and 5-fluorouracil (5-FU) 425 mg/m2 (POLF), which he started on January 31. To prevent neuropathy, calcium and magnesium, as well as glutathione, were given intravenously; glutamine was administered orally.1–5

The patient, who was receiving care at a nursing home, required paramedic transportation on a stretcher to and from the clinic for his treatment sessions. Many of his caregivers felt at the time that treatment was futile and encouraged him to accept hospice care. Despite the odds, however, he insisted on continuing treatment. The patient tolerated the treatment extremely well, with virtually no side effects, receiving 4 weeks of the POLF regimen before his chemotherapy had to be held because of low blood cell counts, at which time he received a dose of cetuximab in the hope that the epidermal growth factor receptor (EGFR) inhibitor might contribute to control of his disease. After receiving cetuximab, the patient developed a moderate rash, a common side effect of HER1/EGFR-targeted agents.

Chemotherapy with POLF continued, along with intermittent cetuximab. Remarkably, a CT scan of the patient’s liver performed on April 27 showed a decrease in tumor size from 10 cm to 5 cm. His CA 19.9 had also decreased from a pretreatment level of 489 U/mL to a normal 18 U/mL. The patient continued to receive chemotherapy as the size of tumors in both his liver and pancreas continued to decrease (Figure 3). As his performance status improved, he was able to begin physical therapy. With encouragement and support from his family, Mr. A.B. continued to improve clinically.

Figure 3.

CT scans performed in April 2006 show decreased tumor volume in liver (left) and pancreas (right).

Throughout the first 4 months of treatment (during which time he was hospitalized twice), the patient continued to require transportation on a stretcher. Subsequently, he was able to be transported in a wheelchair. As he continued to improve, he was eventually able to ambulate with a walker, then a cane; ultimately, the patient was able to walk without any assistance. He continued treatment for 52 weeks with the POLF chemotherapy and intermittent cetuximab. Of note, the patient developed only mild neuropathy, which resolved off treatment.

On March 28, 2006, the patient’s case was presented to the Gastrointestinal Tumor Board at Swedish Hospital in Seattle, where his pathology reports and scans were reviewed. Because of his unusually long survival, doubts arose as to the original diagnosis of metastatic pancreatic adenocarcinoma. The diagnosis, however, was confirmed. Follow-up positron emission tomography (PET)/CT scans showed only a 2-cm lesion remaining in the liver, and no residual disease in the pancreas, nor any other evidence of disease. The patient was evaluated as a possible candidate for resection of the remaining lesion in the liver. After careful deliberation—which included consultations with surgeons in the United States and Europe—it was decided that (1) the risk of significant morbidity and mortality was too high, given this patient’s previous surgery (which included accidental laceration of an artery with need for immediate repair), and (2) the potential benefit of surgery for his metastatic disease was deemed questionable.

Further chemotherapy was recommended, but it remained to be decided which regimen would be most appropriate. Ultimately, the patient was switched to weekly paclitaxel/irinotecan/oxaliplatin on May 9, with intermittent cetuximab until August 28. Subsequently he was treated with erlotinib and low-dose interferon, weekly paclitaxel and gemcitabine, and then again with weekly POLF from October 15, 2007, to February 4, 2008. On February 5, a PET/CT scan showed a small lesion in the pancreas and a 1.8-cm lesion in the central part of the liver, but without evidence of hypermetabolic activity (Figure 4). Follow-up PET/CT scan on August 5, however, showed two hypermetabolic lesions in the tail of the pancreas measuring 2.8 × 1.3 cm and 1.0 × 1.0 cm.

Figure 4.

February 2008 PET/CT scan showed a small lesion in the pancreas and a 1.8-cm lesion in the central part of the liver, but no evidence of hypermetabolic activity.

The patient’s case was again presented to the Gastrointestinal Tumor Board at Swedish Hospital on August 14, where his scans were re-examined, and more importantly, his biopsy specimens were reviewed once more by another pathologist, who again confirmed the diagnosis of adenocarcinoma of the pancreas, but with a few cells staining positive for a neuroendocrine tumor. The recommendation of the Tumor Board was to rebiopsy one of the lesions in the pancreas to reconfirm the diagnosis of a metastatic pancreatic adenocarcinoma.

The patient underwent endoscopic ultrasound with a transgastric biopsy of one of the lesions at the tail of the pancreas on August 22. Histopathologic analysis again revealed an adenocarcinoma with minimal staining for synaptophysin, excluding a predominantly neuroendocrine differentiated neoplasm and reconfirming the original diagnosis of pancreatic adenocarcinoma (Figure 5). In addition, KRAS testing was performed, which demonstrated the presence of the wild-type (or nonmutated) gene in the specimen. The patient resumed further treatment with weekly paclitaxel/cisplatin/irinotecan plus cetuximab, with good disease control.

Figure 5.

Histopathologic analysis of the pancreatic lesion specimens obtained in August 2008 reconfirmed the original diagnosis of pancreatic adenocarcinoma.

Five years out from his diagnosis of metastatic pancreatic adenocarcinoma, Mr. A.B. is doing extremely well—his current ECOG score is 0, he has returned to work, and he recently completed the “Seattle to Portland” bicycle marathon, a distance of 175 miles.

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DISCUSSION

The rationale behind treatment with a weekly “metronomic” dosing of POLF is that, though there is no standard chemotherapy beyond first-line chemotherapy with a gemcitabine-based regimen, both oxaliplatin and leucovorin/5-FU have shown activity in this disease.6,7 A recently reported phase III trial also supports the use of these agents.8 Dr. Margaret Tempero from the University of California, San Francisco, as spokesperson for the National Comprehensive Cancer Network, has also recommended oxaliplatin and a fluorinated pyrimidine as second-line treatment for metastatic pancreatic carcinoma after failure of a gemcitabinebased chemotherapy.9 Paclitaxel, especially when administered on a weekly metronomic schedule, may also have activity in pancreatic cancer,10 with encouraging results recently shown with nab-paclitaxel and cationic liposomal paclitaxel (EndoTAG-1) in combination with gemcitabine.11,12

A more steady, metronomic dosing can result in fewer side effects, leading to better tolerability, but also increased efficacy due to the increased dose density and dose intensity that can be achieved compared to “traditional” chemotherapy.13 The importance of dose density and dose intensity in achieving chemotherapy efficacy is well known.14–16 In addition, the metronomic dosing of chemotherapy may have antiangiogenic properties due to its effects on endothelial cells,17–20 especially with paclitaxel21,22 and perhaps also with 5-FU.23,24 The importance of inhibiting or reversing angiogenesis in cancer control is clearly established.25,26 Recent results of weekly metronomic dosing have shown paclitaxel to be more effective than the previous standard doses of this agent given every 3 weeks in the neoadjuvant,27 adjuvant,28 and metastatic29 settings in breast cancer, with a similar benefit seen in ovarian cancer.30

Studies with the antiangiogenic agent bevacizumab, a monoclonal anti–vascular endothelial growth factor antibody, indicate that antiangiogenic agents might lower tumor interstitial pressure, which could increase chemotherapy delivery to the tumor bed and thus improve efficacy.31,32 Weekly paclitaxel may therefore facilitate increased efficacy of the other chemotherapy agents, such as oxaliplatin and 5-FU, by allowing the agents to reach the tumor better and yet cause fewer side effects systemically, since lower doses of chemotherapy need to be used to attain equal or higher concentrations of the chemotherapy in the tumor bed.

The seeming lack of activity of various chemotherapies and other therapeutic agents, including targeted therapies, and even cells of the immune system in various cancers, may not be due to their inability to kill or inhibit a cancer in the clinical setting, but rather due to their inability to reach the tumor cells in vivo, because of the development of aberrant, diverting blood vessels with tumor angiogenesis. This would explain the interesting and clinically significant finding that in vitro chemotherapy resistance tests appear to correlate better with lack of activity of chemotherapy agents in the clinical setting than in vitro chemotherapy sensitivity tests correlate with the presence of clinical activity.33 Lack of efficacy of many agents against cancer may therefore be due simply to lack of accessibility to the tumor cells. Blocking angiogenesis by adding antiangiogenic agents such as bevacizumab (and possibly weekly paclitaxel) may eliminate this problem and thus optimize the efficacy of various chemotherapies.34

The concept of adding an antiangiogenic agent to chemotherapy to make chemotherapy more effective may also apply to other agents, including targeted therapies. For example, the recent results of the ATLAS and BeTa trials in non–small-cell lung cancer suggest the benefits of combining bevacizumab with the EGFR tyrosine kinase inhibitor erlotinib.35,36

Data on the POLF regimen for metastatic pancreatic adenocarcinoma have previously been reported.37–40 A phase II clinical trial with the POLF regimen is currently under way (clinicaltrials.gov, identifier #NCT00323583), but accrual has been slow. This concept of using metronomic dosing of chemotherapy, especially with weekly paclitaxel, may apply to other chemotherapy regimens as well.41

Of note is that the patient’s pancreatic adenocarcinoma showed no KRAS mutation. Recent work in metastatic colon cancer has shown that only colon cancers that have nonmutated KRAS respond to cetuximab and other therapies directed against the epidermal growth factor receptor.42,43 A recent trial looking at the addition of cetuximab to gemcitabine in the treatment of metastatic pancreatic carcinoma showed no survival benefit with the addition of cetuximab.44 However, 90%–95% of pancreatic adenocarcinomas have a mutated KRAS,45–47 which may have resulted in these negative findings. It is therefore possible that cetuximab may have efficacy in the remaining 5%–10% of patients with pancreatic carcinomas that have wild-type KRAS, including our patient, contributing to his unusually long survival. A clinical trial to test this possibility would be useful.

This report of a patient with metastatic pancreatic carcinoma who responded extremely well to treatment is, of course, a highly unusual case. As we hope to see him continue to do well over time, we hold on to the hope that we will be able to make substantial progress in this devastating disease—indeed all cancers—with new, innovative therapies48 and with the help of such brave, determined, and unrelenting patients as this extraordinary gentleman who remained optimistic despite an extremely poor prognosis and dismal expectations.49 The efficacy and yet excellent tolerability of metronomic dosing of POLF and possibly other chemotherapies for metastatic pancreatic adenocarcinoma, justly recognized as one of the worst, most aggressive human cancers, suggest a role for this type of treatment for other cancers, and in other settings28,29 We encourage further research on this concept of metronomic dosing of chemotherapy and other agents, which may be able to improve efficacy and yet minimize side effects, which is the ultimate goal for all therapeutic interventions.

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Acknowledgments

The author extends his thanks to Dr. Nick Chen for caring for the patient during the author’s recent convalescence, and to Joy Hassan for help with preparing this manuscript.

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Footnotes

Disclosure of Potential Conflicts of Interest

Dr. Chue indicated no potential conflicts of interest.

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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.

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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.

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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.