Survivor Riding 42,500 Miles against pancreatic cancer

Pancreatic cancer research news – Nov 09

Filed under: Newsletter submissions — Chris@road2acure.org @ 3:07 pm November 20, 2009

Below are links to research news and clinical trials that are worth reading.
Rexin G confirmed to be real breakthrough in pancreatic cancer treatment. A must read! http://www.prnewswire.com/news-releases/advanced-us-clinical-trial-confirms-single-agent-efficacy-of-rexin-g-in-metastatic-pancreas-cancer-all-endpoints-achieved-64199822.html
Tumor penetrating microparticles (TPM) offer new potential treatment for pancreatic cancer. Read more: [http://www.sciencedaily.com/releases/2009/11/091102171609.htm]
Circulating Mesothelin Serves as a Marker of Pancreatic Cancer: http://www.physorg.com/news175447210.html
Pancreatic cancer tests may lead to stem cell therapies (i.e. the Trojan Horse): [http://www.privatemdlabs.com/news/Organ_Specific_Testing/Study:-Pancreatic-cancer-tests-may-lead-to-stem-cell-therapies-$19411948.php]
ABRAXANE gets Orphan Drug Status For Treatment Of Pancreatic Cancer, Stage IIB-IV Melanoma [http://www.rttnews.com/ArticleView.aspx?Id=1119047&SMap=1] November is also National Diabetes Awareness month. Read about the Pancreatic Cancer and the Diabetes connection [http://jnci.oxfordjournals.org/cgi/content/full/92/3/192]

Break out your Purple this Month!

Filed under: Newsletter submissions — Kristen.Bardwil @ 2:29 pm

November is Pancreatic Cancer Awareness month. Help us make some noise and spread awareness about a disease that is expected to have over 42,000 new diagnoses this year in the US alone, yet receives only 2% of the National Cancer Institute’s annual budget! Statistics remain largely unchanged over the last 30 years. This is NOT acceptable and November is our month to let people know.

Write to your local media outlets and share with them the hard facts that can no longer be ignored (click here for a full list of stats [link to R2AC website]). Write to your local congressman and urge him/her to support H.R. 745 : The Pancreatic Cancer Research and Education Act and sign on as a co-sponsor to a bill that could make history by enabling the National Cancer Institute the tools and resources it needs to find a cure to pancreatic cancer. You can track the bill’s progress at [http://www.govtrack.us/congress/bill.xpd?bill=h111-745]].

Don’t stop there. Talk to friends, family and co-workers about the disease. Spread the word taking advantage of today’s social media. Post on your Facebook page. Tweet about Pancreatic Cancer Awareness month to your Twitter followers. Now is the time to act! Join us in the fight against pancreatic cancer and help us beat this disease. Change starts here.

Pancreatic Cancer in the news:

A special thanks to Chaka Fattah Read and his endorsement of H.R. 745 this month in support of pancreatic cancer awareness month. Click here to read more: [http://www.earthtimes.org/articles/show/congressman-fattah-supports-legislation-to,1033055.shtml]

News on the Research Front: Below are links to research news and clinical trials that are worth reading.

Rumor Control:

Suzanne Somers was making some noise about pancreatic cancer earlier this month, but unfortunately it was not coming from a well informed place. For anyone who came across an interview with her, Chris Calaprice, Road 2 A Cure founder, is a 6 year pancreatic cancer survivor who has been undergoing chemotherapy since his diagnosis. Unfortunately, there are oncologists who do not understand how to treat pancreatic cancer, but that does not mean it is not treatable. The key is finding an oncologist who is an expert on the disease. They exist. There is HOPE.

For the latest news stories follow us on Twitter @Road2ACure or became a fan or Road 2 A Cure on Facebook where you can join in the conversation. We want to hear from you! Plus in honor of pancreatic cancer awareness month we are looking to reach a goal of 500 fans on facebook by Dec. 1. Spread the word and help us get there.

Join us on the road! Accelerating Change. Inspiring Hope. Changing Lives.

We are looking volunteers to help us as we travel over 42,000 miles throughout the United States carrying a message of urgency and hope.

List of jobs here:

Jennifer Calaprice's Story

Filed under: Your Stories — Chris@road2acure.org @ 12:46 pm

Hello! I’m Jennifer Calaprice.

I am married to a 6 Year Survivor of Recurrent Pancreatic Cancer. Chris was diagnosed in 2003. He was 36 years old.

The floor below my feet had vanished. And, just as quickly, our world was turned upside-down. My only concern was doing what was necessary to keep Chris alive.

Luckily, the cancer was caught early.

The months following diagnosis were a constant stream of hospitals, doctor appointments, surgeries, medications, recovery, chemotherapy, good days and bad days. The successful Whipple surgery, in particular, was an extensive and complicated surgery and recovery for Chris. He was lucky to have received such an option. Three months after surgery, due to the tenaciousness of pancreatic cancer, Chris started his chemotherapy regimen. Three months after that a scan glowed positive for cancer. My worst nightmare was coming true. I was terrified and furious and sad. Lucky for me my sister was a phone call away. Lucky for all of us an adjustment in Chris’ chemotherapy regimen proved successful in eradicating the cancerous cells.

Chris has since been diagnosed with melanoma skin cancer, and has become a diabetic (a potential condition post-Whipple). Luckily, the melanomas were removed with clear margins and he is now maintaining excellent blood glucose levels. Chris continues to undergo chemotherapy for pancreatic cancer and will, quite possibly, for the rest of his life. Needless to say there are many doctors on my Christmas baking list, all of them so deserving.

My husband is lucky to be alive. His strength of mind, body, and soul continues to amaze me. He is lucky to have the best and most experienced doctors and nurses in the world. We are lucky to have our wonderful support group of friends and family. Surviving this without them is unimaginable.

Many people are not as lucky.

Chris and I remain positive and are enjoying our life and our time together, more than ever before.

He is currently 100% cancer-free.

We are lucky.

Please help us spread awareness and raise funds for pancreatic cancer.

Get involved in Road2ACure – The 50 State Tour Documentary beginning February, 20th 2010
Pancreatic cancer is the 4th leading cause of cancer death in the United States, yet it receives less than 2% of our National Cancer Institute research funds.

Hello my name is Chris Calaprice, I am a survivor!

Filed under: Survivorship — Chris@road2acure.org @ 2:34 am

chrisI have survived recurrent pancreatic cancer since 2003. Like many other people diagnosed with pancreatic cancer, I am not old, nor an excessive drinker. We understand little about the causes of this disease or its prevention. This can change with your help.

I have lived a full life—a life full of backpacking, multi-hundred mile bicycle tours, service in the U.S. Army Rangers, rock climbing, sailing, crossing oceans, diving wrecks. I have a loving marriage, and the best friends and family imaginable. Unfortunately, many others who are diagnosed with this disease will not have time to fulfill their dreams or enjoy their family and friends.

Pancreatic cancer is the 4th leading cause of cancer death in the U.S.; however, it receives much less funding than any other leading cancer. Pancreatic cancer is preventable and curable; we just have not yet found the prevention or the cure.

It is not in my nature to solicit help from others. However, as Edmund Burke once said, All that is necessary for evil to succeed is that good men do nothing. I find that I must give voice for those who no longer can or for those who are consumed by the battle and can not spare the energy. Our goal is that with the help of caregivers, cancer advocacy organizations, private sponsors, federal funding, researchers, and dedicated physicians we will understand this disease and find a cure. Any assistance you can offer in helping us get the 1st Annual Ride for Hope Memorial Ride and Rally off the ground will be most appreciated. It is our sincere hope that you will find a way to help us raise the visibility of our motorcycle ride and help raise public awareness of this devastating disease.

My name is Chris Calaprice and I am a survivor. We are few. Rarely are we around long enough to make others aware. I speak for those who can not.

We need your help. Please join us and make a difference.

No Ordinary Day?

Filed under: Road 2 A Cure - Who we are — Gigi @ 11:54 pm November 19, 2009

On any ordinary day you can find me full of hope and positivity for what the future holds for me & my loved ones. Specifically how we’ll continue to encourage and inspire one another to reach harder and further for the brass ring. How we’ll always be one another’s advocate for dreams attained, lives well lived, and giggles through “senior moments.” It sucks, then, that this is no ordinary day. Today I’m feeling much like cold, sodium-free broth….bland and unappealing with no possibility of being a delectable dish or even the base for something more appetizing.

You see, the past couple of days have been physically unpleasant, and feeling physically unwell contributes to feeling psychologically and emotionally unwell, too. I suspect that this is the way it is with most who’ve been diagnosed with cancer. My physical issues are persistent reminders that I have been personally smacked by cancer. Right in the forehead. Everyday I see the imprint. On good days, though, it’s a mere shadow instead of the throbbing red beacon that it is today. A beacon that flashes Life’s Not FAIR!!! It’s not.

When I was diagnosed three years ago at the ripe old age of 40 with pancreatic cancer, I thought there MUST be a reason for it. There must be some environmental or hereditary or karmic contributor. And in the three years since one of the worst days of my life, there is still no apparent reason. The truth is that our global medical community remains in the dark about causes for this swift and deadly disease, and continues to struggle to affect early detection. While modern medicine struggles with that, those like me struggle with acceptance, anger, and unfortunately abandonment.

It’s amazing how many so-called loved ones turn heel & hit the happy trails when the going gets tough and their support is needed. There have been no fewer than four friends & family members who, upon learning of my fight for life, decided that it was too much for them to bear. As if the road would be easy for me. I guess since it was my cancer, I owned it, it would be easier for me? My situation was more fortunate than so many others: I was able to have surgery to remove the tumor that quietly grew inside, secretly stealing my hopes of a long and joyous life, a family of my own, finding a career that creatively challenged me. While I was being robbed, those on whom I relied figuratively locked their doors and drew their blinds.

The fighter in me says, “Screw them!!! I am my own fortress!” The mere mortal asks, “Who the hell wants to be a fortress???” Seriously. Being that – a fortress – forces one to keep everything, both good and bad, at bay. I have a support system. People who’ve been around and will

continue to be in my corner cheering me on. That’s what I keep telling myself. There are far too many times, however, when a cheer is not enough. I need a hug. I can’t help feeling that at some point the only one standing in this corner will be me. Alone. I am currently cancer-free, but if it returns who else is going to bail out? Who else will slowly pull away until our communication is reduced to the occasional text message? Is it possible to feel more alone during a greater time of need than I do now? And now…now I’m defective. My body has betrayed me in the most unimaginable way. There is no man in his right mind who would welcome the adventure of loving someone with such a miniscule chance of survival.

All things considered, I am doing exceptionally well, which sounds funny in light of how I feel today. Maybe I’m not so well emotionally. Okay, maybe not so well psychologically, either. I make do; I’m not dead. There are physical effects of my new organ deficiency and configuration. Things don’t work like they used to; this is my new normal and my new normal is sometimes depressing. There are lingering effects of 6 months of chemo, especially fatigue although chemo ended over 2 years ago,. Oddly enough, full time employment isn’t conducive to midday naps. I should be thrilled, though, that finally I get to begin shaving my pits & legs again! Every woman’s dream, right?

Of the few with whom I’ve shared my diagnosis and journey of acceptance and healing, I don’t think any truly get it. They see me and their perception is that all is well. In fact, I maintain a semblance of an ordinary life in spite of all the times I need a helping hand and there isn’t one being offered. Granted, I’ve never been one to often ask for help, but it seems to me that those who know would offer.

I would offer…Wouldn’t you?

**Please check out my weekly blog at www.Road2acure.org coming SOON!!!**

Donate Items for the tour itself or items for raffle and auction

Filed under: Uncategorized — Chris@road2acure.org @ 9:01 pm November 18, 2009

Toy Hauler / 5th Wheel

Mylar wrapping for vehicles

Purple paint jobs for Videographer and Jennifer’s bikes

Communications technology

Everything motorcycle (these make great raffle and auction items)

Oil & Tires

Gas cards

Food (grocery and restaurant gift cards)

Shipping materials

Printing

Campground chain

What would you want to win in a raffle?

What would you bid on at a charity auction?

I am Nora Calaprice, mother.

Filed under: Survivorship,Your Stories — Nora @ 10:20 pm November 16, 2009

All the other roles that I have played in my relatively long life – happy young wife, unhappy young widow, career person, miserable party in a second attempt at married bliss, cancer survivor – are secondary to that essential truth – I am a mother.

It is impossible to imagine that anyone could suffer life-threatening cancer without really noticing it much, but I think that is what happened to me.

Today, as in all the other days that have passed since October 2003, I live with the fact that my son, 41 years old, is a survivor of pancreatic cancer. Each of those days I have woken up with the same absolutely determined thought – pancreatic cancer will not come back today or any other day. This mantra must be part of what has made me able to continue being what I think of as a whole person. It has kept me believing that there is hope no matter what.

I think I can say honestly that I really do understand what everyone with one of these dreadful diseases must suffer. Six months after Chris’s 10-hour surgery and his prolonged pain-filled recovery from it, I was diagnosed with ovarian cancer, had the surgery, and Chris and I together endured the chemotherapy that followed – 6 months for me, unending to this day for him. My memories of that awful time primarily reflect my fear and dread of what was happening in Chris’s life, and my concern for its effect on Jenny’s life, and on my other son and his family. I hardly thought about my own.

Through all this I watched my son and his wife face every day – good and bad — with a spirit of optimism and determination to really live every moment. They were, and remain, our inspiration, our cornerstones that help us maintain our strength and spirit. They are my heroes.

If I could speak to all out there with this terrible cancer and other bad ones, I would say maintain hope, do not be persuaded that there is none.

As Chris and Jenny have taught all of us to do, be determined to believe that help is on the way. We will find the means to fund the research for methods of early detection, specific new treatments, dependable remission, and CURE.

WE WILL.

Meet Jill

Filed under: Survivorship — Chris@road2acure.org @ 10:15 pm

Survivor Jill

Here is the story:

Dear Family and Friends,

Summary: Jill’s CT scan at the end of April was clear. She still has chronic pain, frequent nausea and other side effects, but she is alive and that is no meager feat. Her biochemical markers are holding or improving. She looks better and better all the time. Based on appearances, it is easy to forget what she faces daily. While we are not out of the woods yet, few get this far. Jill has passed the two-year mark.
__

It is now over two years since Jill’s diagnosis and two major surgeries and, so far, there is no evidence of recurrence.

Of all those diagnosed with pancreatic cancer, few make it this far. In most cases, something like 80-85%, by the time it’s discovered the cancer has already metastasized and it’s too late for surgery to remove a localized tumor. Life expectancy is a matter of months. Dith Pran, the inspiration for the film The Killing Fields, died in March this year, less than 3 months after diagnosis. Bill Lofthouse, who made more Rose Parade floats than anyone died in July after “a short bout with pancreatic cancer” as the Los Angeles Times put it. Gene Upshaw, NFL Hall of Fame guard and head of the NFLPA, died August 20th, just three days after his pancreatic cancer was diagnosed.

Without surgery, pancreatic cancer is essentially a death sentence. But surgery is hardly a cure. Luciano Pavarotti had surgery the same month Jill did. He died a year later. Jill’s chemo pal, Pam, had surgery at Stanford and she’s gone now. A local woman who had surgery with Dr. Arnaout a month before Jill, and whom I had met previously because her daughter attended school with mine, has also died. Randy Pausch, the 47-year-old Carnegie-Mellon professor of “The Last Lecture” fame had surgery in September of 2006 (two months after Jill’s) followed by the very best treatment medical science could bring to bear. His passing last month reminds us all how deadly pancreatic cancer really is. Randy didn’t survive two years after his diagnosis; Jill already has.

Because pancreatic cancer is so swiftly lethal, two years is a significant milestone. Half of those diagnosed will die within 6 months. 75% will die within the first year. Fewer than 10% survive two years and many of those are battling active cancer. Those who have no evidence of disease at the two-year mark are a lucky few. Two years ago, when Jill had recovered enough to meet with her future oncologist Dr. Isacoff, she asked “What are my chances?” Isacoff replied, “No one knows” and then as he walked out the door he added, “If the cancer returns, it’s usually in the first two years.”

“If the cancer returns, it’s usually in the first two years.” Those words have echoed in my mind ever since. It’s been two years. So far, Jill’s cancer has shown no signs of returning. CT scans have been clear. Jill doesn’t make CA 19-9, the preferred serum tumor marker for pancreatic cancer, but the next best diagnostic, CEA (carcinoembryonic antigen), was also negative. Although only 15% of her pancreas remains, she requires relatively little insulin and her last Hemoglobin A1c was almost non-diabetic (6.3). Her BUN (blood urea nitrogen) had been borderline high, but is now coming down so her kidneys appear to be returning to normal. One of the chemotherapy drugs Jill was given was Cisplatin and the biggest concern with Cisplatin is toxicity to the kidneys. Jill isn’t just holding on, she’s slowly getting better and better. Just the other day, she complained about having to get another haircut so soon because of how fast her hair is growing. Considering the chemo she’s been through that complaint was a blessing in disguise.

To have no recurrence at the two-year mark is exceptional; to have no recurrence at the two-year mark when the cancer was the type of cancer Jill had and was as advanced as it was at the time of surgery might well be a first. Some forms of pancreatic cancer, such as islet cell, are not as aggressive and have a lesser tendency to metastasize. When Steve Jobs of Apple Computer was diagnosed with islet cell pancreatic cancer, he had surgery and that was it. No radiation and no chemotherapy, and he has been doing fine for years. These milder forms of pancreatic cancer, as well as small tumors that were detected very early constitute many of those who make it two years without recurrence. Jill had adenocarcinoma, the worst of the worst, and it had already metastasized locally to the spleen, some lymph nodes, and possibly the circulatory system. In a recent interview, her surgeon, Dr. Walid Arnaout recounted:

Jill hoped the tumor would be completely resected. However, after a seven-hour operation, Dr. Arnaout discovered the tumor was very extensive. “It was wrapped around major blood vessels, which made its complete removal too risky to perform,” he explains. In essence it was deemed unresectable. Without a miracle, Jill had three to six months to live.

“I struggled with the fact that Jill had no hope without completely removing the tumor followed by extensive chemotherapy,” remembers Dr. Arnaout. “Yet the surgery was risky and perhaps life threatening.”

Three days later, Dr. Arnaout and Jill decided to take a second chance at removing the tumor. Before entering the operating suite, she said goodbye to her husband and family as if it were the last time she would see them. Ten hours later, Jill’s tumor was completely removed and her hopes for survival became a reality.

Dr. Arnaout often refers to Jill as “my miracle”. When Jill and I were in Washington, D.C. this past March Jill spoke with Julie Fleshman, co-founder and president of the Pancreatic Cancer Action Network. Julie mentioned that she’d never heard of anyone having two operations.

As you all know from my first letters, Jill’s recovery from these two surgeries was far from easy. In all honesty she’s still recovering. She’s just been taken off her daily Fragmin (heparin) injection which is a relief for both of us. Despite Lidocaine and icing beforehand, this injection was painful and could leave a bruise the size of a quarter. I still cannot comprehend, and certainly cannot put down in words, what Jill has been through and continues to face.

Some days are better than others. Often she’ll wake up nauseous or in pain and doesn’t much feel like eating. Every single day is measured in terms of the intensity of her pain and how many “swigs” of Oxycodone IR (Immediate Release) she’s taken. We tried a special pain management physician, but he just prescribed different pills with even worse side-effects than Oxycodone. Jill has a gazillion doctor appointments, scans, blood tests and other procedures at facilities from Thousand Oaks to UCLA. There are a handful of pills before every meal; Jill could not survive without special digestive enzymes.

Jill does many of the things she used to. The notable exceptions are golf and stained glass. It hurts too much to swing a golf club. Because she’s been on an aggressive blood thinner, she couldn’t afford to get cut doing stained glass. Her mornings are usually pretty good: she goes swimming sometimes, has lunch or coffee with different girlfriends, goes grocery shopping, etc. By late afternoon, the pain has increased; nonetheless Jill still cooks dinner several days a week. We manage to get away every once in a while, often with our dog Brandy. We made it out to Colorado to see my Mom. Jill’s going to Sea World in two weeks to spend a day swimming with, feeding, and helping to train the dolphins there (I’ll be working the video camera).

Of all the things Jill does these days, spending time with her grand-daughter Quincy is at the top of the list. Quincy recently turned one, has loads of personality and this hypnotic smile. She’s at the age where everything is either a discovery or a game. All you new boomer grand-parents out there know exactly what I’m talking about (see photos).

To say that Jill’s tough is a bit of an understatement. In June, we decided to take a 4-day weekend on Catalina Island. As we’re about halfway to Avalon Jill realizes she forgot to pack her Oxycodone. Since this is her only relief from pain, it was a serious mistake. We couldn’t have Dr. Isacoff telephone or FAX in a prescription because Oxycodone is a controlled substance (a powerful opiate) and only the original, handwritten prescription on a special, numbered DEA form is valid. Besides, most pharmacies are not going to have stuff this strong lying around. We could have, and maybe just should have gone home the next day and chalked it up as something not meant to be. Not my Jill. What does she do? She goes shopping and buys a new bikini. Despite constant pain, she’s determined to live as if nothing at all was happening. Later, as we lay out by the pool sipping our mojitos, every time I looked at Jill I just melted.

Jill is an inspiration to more than just me. Dr. Arnaout has returned to SoCal to start a center for liver and pancreatic cancer at Northridge Hospital. He and Jill were interviewed for a forthcoming article for the hospital’s quarterly newsletter. The quotations in this letter are from that interview. My daughter Jane is in training to run the NY Marathon to raise money for cancer research at Memorial Sloan-Kettering Cancer Center in NYC. Her pledge page is https://fredsteam.mskcc.org/fundraising/Controller?action=userHome&user_id=38559&event_id=113. Please lend her your support. She makes her father proud. Lastly, our friends Chris and Jennifer Calaprice plan to interview Jill for their forthcoming film on pancreatic cancer. Chris is a 4-year pancreatic cancer survivor whose cancer returned and Dr. Isacoff has been able to keep it controlled. Their web-site is http://www.road2acure.org/.

Jill’s recovery so far is, statistically speaking, exceptional. But statistics are the mathematical equivalent of “luck”. Statistics are all about averages, not about individuals. So, while Jill and I are most certainly “lucky”, I do not believe her progress is entirely accidental. When Jill’s cancer appeared, she ignored the statistics. During her interview she said,

“Every day I tell myself I don’t have cancer and it won’t come back,” proclaims Jill. “It’s the only way I can stay positive. You can choose to fight or believe in all the statistics you hear. I tell myself that I can and will beat the odds.”

I didn’t ignore the statistics, but I understood their limitations. A handful, and I do mean a handful, of people have actually beaten pancreatic cancer. There’s one 30+-year survivor. It is possible. My mantra is simple – “Why not Jill? Why not now?”

It doesn’t take much study to realize that no one really understands pancreatic cancer, or any cancer for that matter. Otherwise, there would not be all these different, and often conflicting, explanations. There’s an Italian oncologist, a real MD, who believes that cancer is a fungus! His treatment is a lot less toxic (and much less expensive) than conventional chemotherapy; it’s just sodium bicarbonate delivered directly to the tumor. There are many other theories and alternative treatments and have been for decades. They are all part of the puzzle. They are all partly right.

The fact that the very words the medical establishment uses are not consistent with reality does not inspire my confidence. The term “cancer free” is very misleading. There’s no way to determine if a given cell is carcinogenic without putting it under a microscope. You obviously can’t do that for every cell in your body. Just because we can’t detect any cancer with the limited tools we have today doesn’t mean it’s not there. Since every single patent was “cancer free” just before the cancer “appeared”, from a predictive standpoint the term has little value. The notion of “cured” is equally useless. Labeling the absence of recurrence over 5 years as “cured” is arbitrary. There’s nothing magical about 5 years. The initial stages of cancer can be very slow; they can take years or even decades. “Cured” is just a way for doctors to claim “victory”. And my favorite: doctors talk about cancer “coming back” when it seems obvious that maybe it never really left.

The shear complexity of all the inter-related biochemical pathways that we all possess makes nderstanding cancer about as complex as understanding all human biology and biochemistry. Asserting that cancer is just a bunch of cells whose DNA got screwed up is, at best, only part of the picture. DNA is only a recipe, there’s a sea of proteins and amino acids floating around that are both the chef interpreting that recipe and the ingredients the recipe uses to sustain life. Rather than only viewing cancer as a condition that you either have or you don’t, it seems equally useful to view it as a process that is either under control or out of control. We probably all have cancer cells lurking around inside us. As long as our immune system manages to find them and eliminate them before they get out of hand, they are undetectable with today’s technology. What if cancer is simply a catastrophic breakdown in all those inter-related processes?

There’s good evidence suggesting that the best way to fight cancer is to be healthier. That’s what Lance Armstrong, Ruth Heidrich, and many other survivors have done. Even Dr. Isacoff unwittingly gave credence to this notion. Every chemotherapy session and every appointment ever since began with the same general questions: “How’s your energy? How’s your weight? How’s your appetite? How’s your breathing?” This was followed by questions to ascertain if there were specific problems from the chemotherapy like “Any vomiting? Any sores in your mouth?” and so on. It eventually dawned on me that those general questions were the best indication of whether or not the treatment’s working. Dr. Isacoff ought to know what to look for; he’s been doing this for 30 years.

While Jill and I had thought of ourselves as reasonably healthy, we’re trying to be more so. Our diets are increasingly vegan or vegetarian with a low glycemic load. You can’t change your DNA, but you can affect that sea of proteins, particularly by what you eat. The strong correlation between the amount of animal foods consumed and the incidence of heart disease and cancer world-wide is impossible for us to ignore. The many mechanisms linking cancer with animals in the diet are becoming increasingly well understood, but you’re not likely to hear much about it. If it isn’t obvious why this is so, just “follow the money”. The high glycemic index and load of refined foods floods the bloodstream with excess glucose and cancer thrives on excess glucose. Jill and I take a few carefully chosen supplements. We get a little exercise. However, the objective things we do are only half the battle plan.

In the final analysis it takes more than doctors and diets to fight cancer. More than anything it requires an uncommon frame of mind. Jill has been, in the best sense of the word, fearless. Try to imagine being faced with a diagnosis of pancreatic cancer. You can’t. It is scarier than I can imagine. Yet somehow, you have to move beyond that fear. I don’t mean bravado, nor a denial of the gravity of the situation, but rather a refusal to let it squeeze the life out of you. Dr. Isacoff’s PA incredulously asked Jill not once, but twice during two separate chemotherapy sessions, “Are you happy???” At first I didn’t get it, but I suppose that, relatively speaking, Jill was notorious in Dr. Isacoff’s office. Yes, she’s battling the most lethal form of cancer known to mankind, but not even pancreatic cancer is going to stop Jill from being Jill.

Two years ago Dr. Arnaout told me, “What we need here is a miracle.” What he did not realize was that the real miracle had already occurred. The miracle is not that there is as yet no recurrence. The miracle is Jill. The miracle is revealed in everything that she does, played out day after day.

Our special thanks to those of you who have made individual donations or written their Representatives and Senators to urge their support for pancreatic cancer research.

Please keep Jill in your thoughts and prayers; I believe this journey has only just begun,

-Walter

Meet Kay

Filed under: Survivorship — Chris@road2acure.org @ 10:10 pm

My name is Kay Richardson and I live in Fairfax, Ca., a beautiful little town not far from San Francisco. In August 2006 I was living temporarily in LA while co-developing a TV series about green architecture. This venture was a natural evolution after many years of great attention to healthy living – I’d eaten organic since my youth, exercised daily and enjoyed almost perfect health.

That August I had just turned 54 and was shocked when I suddenly felt listless, a loss of appetite and even depressed. My friend noticed my color changing to yellow and within days I was in the hospital having a stint put into my bile duct. There was a tumor blocking it and causing the bile to back up.

Fortunately I found my way, almost blindly, into the hands of a kind and very experienced surgeon in LA. Because the 2 cm mass had blocked my bile duct the cancer was diagnosed early enough to undergo a Whipple procedure. The surgery and recovery went remarkably well. But while the margins of the surgery displayed no cancer cells, there were two lymph nodes out of 11 examined that did reveal malignancy. The pancreatic tumor was staged at 2B and my surgeon strongly encouraged me to start chemo therapy as soon as I could.

I am a single woman with no children and here was my greatest fear before me – getting seriously ill with no primary person by my side. It was a great revelation to realize that I had the power to face that fear. It began with the flood of friends and family who were immediately by my side. I knew then I would not have to endure this confrontation with my mortality alone. But what surprised me the most was the life force that rose up inside and began to take control of my healing.

I certainly had my moments of despair. A sleepless night of internet searching filled with pancreatic cancer statistics can do that for sure! There were days when I was positive I did not have what it would take to fight what seemed a losing battle. But the life force continued to prevail. Interestingly, the TV series I’d been working on was called Design For Life. Now I felt challenged and motivated to design a strategy for my own survival.

I had returned to the Bay Area after recovering from the surgery and sought the opinion of a top pancreatic specialist at UCSF as well as a general oncologist in Marin County where I live. At the same time I learned of a clinical trial for a vaccine at Johns Hopkins in Baltimore. The idea of having success with a vaccine compelled me to make that happen. It required that I undergo either chemo therapy and/or radiation first however. Ultimately I chose to do the standard Gemzar therapy for six months with a well respected general oncologist near my home, someone who was part of a practice using integrative modalities as well.

When I finished the 6 months of Gemzar therapy I was able to fly to Baltimore to qualify for the vaccine trial. This meant passing a CT with no signs of recurrence. I passed the CT and had real hope at that time that I could beat the odds. I received three doses of the vaccine over a period of three months, flying each time to Baltimore. After that the plan was to present a CT every 6 months proving no recurrence and if so I would be given another booster shot.

I was feeling great and certainly I wanted to believe the vaccine was working, but one day in October, a little more than a year since my initial diagnosis, I woke up with a strong intuition that I needed to check my CA-19-9. Somehow I had fallen in the cracks between Hopkins and my local oncologist, who felt I was in good hands with them. Nobody had suggested I get my markers checked in that long six month interval however. Sure enough, the cancer markers had risen to 72. This is not a high number but I felt a sense of alarm. I was beginning to realize that I had to be even more proactive about my survival plan. I had to take more charge of how things were being managed and for that I had to educate myself more.

It motivated me to attend the Pan Can symposium in LA the following month.
I felt a significant jump in my own knowledge of the disease after listening to the top pancreatic specialists give their presentations that day. I talked to many other survivors and got a sense of our collective will to find solutions at the cutting edge of the field. From this I knew for sure that if a recurrence was indeed happening I could no longer rely on my general oncologist. I needed the best specialist I could find. Of course I wished that I had attended this symposium a year earlier!

In spite of what I’d learned at the conference, the next several months saw me immersed in a tragedy of errors with the diagnosis of a recurrence. My cancer markers were spiking upward at an alarming rate yet even the Johns Hopkins doctors could see no tumor on the CT. They told me I could continue in the trial. Stanford told me I indeed had a tumor but my pancreas could perhaps be removed for a cure. A cyber knife solution was also suggested. There were several more twists and turns as my markers soared to 638 and Christmas was approaching. But what I had learned at the Pan Can conference gave me a new confidence about what direction to take next.

It was finally clear that there was indeed a 4.9 cm tumor, located in the surgery site of the removed pancreas head. A CT and PET scan had revealed no metastasis however. But I remembered the words of Dr William Isacoff, whom I’d seen speak at the symposium. He’d emphasized that pancreatic cancer is a systemic disease. Even if you take out the main mass there are almost surely microscopic cells waiting in the wings, getting primed for the next assault. No matter how much I wished for a new surgical solution, I felt in my gut that he was right.

After several conversations with Dr. Isacoff, at UCLA, and several of his patients, I decided to trust his vast experience and innovative approach to long term chemo therapy. This meant traveling to work with him, but with the urgency of how fast my tumor was growing I knew I had to make a smart decision fast, no matter how inconvenient. Fortunately, after we saw that the protocol was working he let my local oncologist follow his lead with treatments near my home as well.

I am happy to report that after six months under his care my cancer markers are down to 56 and my last CT scan in July showed a 60% reduction in tumor mass. I struggle at times with the side effects of the therapy, I get cranky and discouraged, but mostly, I have learned to take one day at a time. There are still enough days in a month that I feel well enough to eat heartily with friends, work in my garden and walk in the woods. While I hope to survive long enough for a breakthrough to a cure I accept that my life, at least statistically speaking, will probably be far shorter than I had expected.

I have survived for two years! For this I am immensely grateful because they have been two years in which I truly know I am alive. I take in the world with an awareness I never had before this encounter. Each season, I know it could be my last. I take in the beauty of life like nectar – like the blessing it is.

Meet Gigi

Filed under: Survivorship — Gigi @ 10:07 pm

GigiI am Gigi. I’m a very private person, so my sharing this information isn’t easy. I was diagnosed on October 6, 2006 with Stage 2 pancreatic cancer, had the Whipple on October 17th, began 6 months of chemo on my 41st birthday – December 15th, 2006. My margins & all 29 lymph nodes are clean. It’s been quite the journey, but I’m strong & happy & healthy.

I do not have cancer, I had it; it’s gone & I’ve got the scar to prove it. I am NOT a cancer victim, but a survivor. You can bet your a** (& anyone else’s) that I’ll be inhaling chocolate cake & French fries @ my 80th birthday party!!!

Upon my diagnosis (after getting up off the floor) I had to laugh because, while I knew there’s a pancreas “in there” who really knows what it does or that cancer of that organ can be 95% fatal? Treatment is typically palliative because it’s rarely caught early, but I was able to have the surgery – the Whipple, which removes part of the pancreas, the gallbladder, part of the stomach, & part of the lower intestines. I was out of bed & walking the morning after surgery. I was home in a week. Now 12 months after chemo & nearly 2 years after surgery, I’m still shaking my head in disbelief. Even still I’m thriving & feel well, overall, ramping back onto the highway of my life with such completeness that my doctors are astounded. My research on various cancer inhibitors was exhaustive in the 10 days between diagnosis & surgery, and as such, I take approx. 20 vitamins and supplements daily. My diet includes nothing fried, very little fat, & consists of “no meds” – no Meats, no Eggs, no Dairy, no Sugar. Ostensibly, cancer cells feed on sugar, which is why one of the most accurate diagnostic tests, the PET scan, works. During the scan, glucose is injected into the body and the scan pinpoints cells that absorb the glucose at an accelerated rate.

Three of the key elements that have sustained me throughout this ordeal are my sense of humor, scathing wit, & dear friends and family. If there’s funny to be found, I’ve got it. If there’s irony and insanity, count on me to point it out…while rolling on the floor laughing at its hilarity, nudging my loved ones to do the same. I marvel that I am able to hold onto these things and keep my head in a positive place. It’s not an easy task considering that pancreatic cancer has a high rate of recurrence — only approx 2% – 5% live beyond 5 years of diagnosis, with most perishing within the first year. I don’t like those odds. They suck. This is my new reality, the strong possibility of recurrence. There are times when I feel nearly hobbled by fear of the unknown, but fear of what I do know is emotionally crumbling. Yet I remind myself every moment of every day that I am a statistic of one. There are 2 people whom I’ve heard of who are 30+ years post-diagnosis and a handful who are 10 – 12 years past.

My morning mantra is:

  • I am cured/healed.
  • I am strong.
  • I feel great.
  • I eat & think healthy 24/7.
  • I am living to be a healthy, happy, vital 80-year old.

Occasionally, I have one of ‘those days. Funny ’cause that kinda day usually doesn’t begin until late afternoon. I don’t know what happens, where it comes from, or why. Something triggers it &, though it’s often fleeting, it shakes me to the core.

I have “the thought.” Shyt!!! I’m going to die. What the heck happened? How did/could this have happened?? When “the thought” occurs, it’s accompanied by a feeling of lightheadedness. My heart feels like it’s regurgitating & reswallowing itself repeatedly. It’s surrealistic and uncomfortable on a physical and emotional level. And then it’s gone. Not as quickly as it came, and it leaves a residue that lingers for several hours or so. As it diminishes in intensity, the thought that inevitably follows is this:

Shyt. everybody’s gonna die. LOL. Before the cancer diagnosis I knew I’d die someday, so what’s the difference? LOL. That’s reality. It is what it is. & what it is that I’ll be trying to figure out on my 80th birthday how to blow out 80 birthday candles. We’re having French fries & chocolate cake…& a 28-year-old stripper. Make sure you save your singles. :)

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