The National Comprehensive Cancer Network has just published NCCN Guidelines for Patients: Colon Cancer in an online version.

It’s simple to read. Just turn the pages like a book.

You can also download a PDF copy with an easy to use, clickable table of contents.

There is also more patient-focused information on a NCCN.com, a website for patients, caregivers, and families.

The Guidelines for Patients are based on NCCN Clinical Practice Guidelines in Oncology.  Updated frequently, the NCCN Guidelines are widely used by doctors to help them with making treatment decisions based on the latest evidence. Panels of oncologists, other health professionals, and advocates meet regularly to review new research and revise the guidelines to reflect it.

The NCCN Colon Cancer Guidelines for Patients include both basic information about colon cancer and specific evidence-based guidelines for diagnosis, treatment, and follow-up at each stage of the disease.

It also includes a helpful dictionary of cancer terms, questions to ask your doctors, and a form you can fill out to keep track of doctors, tests, treatments, and your follow-up plan.

The Colon Cancer edition of NCCN Guidelines for Patients is not yet available in printed form, but it should be in the future.

The Fight Colorectal Cancer Answer Line uses the NCCN Clinical Practice Guidelines in Oncology as we answer patient questions.  It is up-to-date, reliable, and based on good evidence. The Patient Guidelines are similarly reliable, but easy to read and understand.

I have a small disclosure: I am a member of the NCCN Colon, Rectal, and Anal Cancer panel. So I do support the guidelines, but I have also had an opportunity to see how carefully the panel members review new information and decide whether the evidence is strong enough to include it in guideline revisions.

Read the NCCN Guidelines for Patients: Colon Cancer.

In the weeks leading up to March, Colorectal Cancer Awareness Month, the Washington, DC, Comcast station is broadcasting this piece to make people aware of the disease, as well as the work that Fight Colorectal Cancer is doing locally and around the country.

Comcast Newsmakers is a unique news program that provides community leaders with a platform to discuss issues and ideas important to the communities they serve allowing them to better connect with their constituents and the community at large. Fight Colorectal Cancer thanks the station for airing this vital public service announcement.

The packaging is different from genuine Avastin marketed here by Genentech. It includes a Roche logo which isn’t on the real drug, along with different codes.

Avastin is not in shortage now, and there are adequate supplies to meet the need.

Patients being treated with Avastin are urged to let their doctors know immediately if they have unusual symptoms.

Genentech says,

If a patient taking Avastin is experiencing any side effects, they should contact their healthcare provider immediately. If the patient is experiencing any side effects that the healthcare provider thinks may be related to Avastin or that are different from those commonly associated with Avastin, the healthcare provider should immediately call FDA’s MedWatch Program (1-800-FDA-1088) or Genentech’s Drug Safety Department at 1-888-835-2555.

Nineteen US medical practices have been identified by the FDA as having bought the counterfeit Avastin and have been told to stop using it immediately.

Each year, the best and brightest minds in gastrointestinal oncology meet to discuss the latest research into colorectal, pancreatic, esophageal and other GI cancers. The 2012 symposium offered major news for people living with colorectal cancer, and we were proud to be able to bring that information to you.

Listen in as Dr. Dan Sargent of the Mayo Clinic Cancer Center and Kim Ryan, Fight Colorectal Cancer’s Director of Patient Information Services, discuss what is on the horizon for patients living with colorectal cancer.

Cindy Robinson

Fight Colorectal Cancer advocate Cindy Robinson of Virginia has successfully petitioned her governor, Bob McDonnell, to proclaim March as Colorectal Cancer Awareness Month. This is the second consecutive year that Virginia has issued such a proclamation as a result of Ms. Robinson’s activism.

Since President Clinton issued the first Presidential Proclamation recognizing March as Colorectal Cancer Awareness Month over a decade ago, each year advocates request that their state and city officials issue proclamations acknowledging March as Colorectal Cancer Awareness Month. 

Ms. Robinson followed the easy steps laid out in Fight Colorectal Cancer’s Proclamations 101 advocacy call to action and sent the request via email according to Virginia’s guidelines. She also contacted her local state senator, Jill Holtzman Vogel, to put in a good word with the governor’s office.

We thank Virginia Govenor Bob McDonnell, Senator Jill Vogel and advocate Cindy Robinson for recognizing the need to raise awareness about colorectal cancer and taking the first steps needed to accomplish that task.

Get your Governor to declare Colorectal Cancer Awareness Month in your state. Visit our Proclamations 101 page for easy instructions.

Pat Steer

We are glad to welcome advocate Pat Steer to the Fight Colorectal Cancer Research and Treatment News.  She’s been living with stage IV rectal cancer since 2004.  A writer, she’s blogs about her life with cancer, training her beloved dogs, and her passion for good food at Life Out Loud.

Since my cancer diagnosis in 2004, my life has been full of choice and decisions. Cancer forces you to prioritize. Some days, it has seemed like cancer and treatment were calling all the shots in my schedule, changing my plans, and forcing decisions I didn’t want to have to make.

But I’ve made a few choices in the last eight years where I didn’t let cancer force my hand. I train and show dogs, and that’s very important to me. Early on, I decided to make attending my favorite dog shows a priority. I kept up my now-25-year tradition of camping with friends at a local show circuit. I entered a special event dog show held on New Year’s weekend, 2005 – three shows in 48 hours that wore me out, but was so worth the effort.  I covered Westminster in 2008 through 2010 for my column.

All of those decisions meant that sometimes I prioritized dog shows in spite of my treatment schedule. My oncologist, who once told me “I want you to live your life,” carefully moved my treatments around to accommodate the things I really wanted to do. After all, what good is surviving cancer if you can’t do the things you love?

At the same time, sometimes dogs shows and cancer just couldn’t fit together into the same time period. I’ve missed the chance to go to the national English Cocker Spaniel specialty twice now – once, because I was having liver resection and then again in 2011 due to intense treatment for a recurrence. Yes, I can prioritize, but cancer emergencies sure can mess up dog show plans.

There’s one other activity that I’ve made a choice to participate in each year: Fight Colorectal Cancer’s Call-On Congress.

Sometimes I’ve been on treatment or recovering from surgery. That meant I had to participate from afar by calling my congressmen and senators and visiting their local offices. But in 2010, I was able to attend Call-On Congress in person. I promised myself after that experience that as long as I was healthy enough to participate in person, I’d make attending Call-On Congress my first priority every year. And I’ve kept that promise to myself, that choice to make a difference, even when it meant giving up another trip, even if it meant skipping a dog show.

Why is making a trip to D.C. to meet with congresspeople and senators such a big deal?

Three reasons:

1. I gain great energy from meeting other survivors
2. I get a chance to stand close to the electricity of government in action.
3. Call-On Congress made me realize the power of the personal touch.

Every survivor has the opportunity to put an unforgettable face on colorectal cancer. In person, we can take this disease out of the dark, make it more understood, make it real in a way that emails and phone calls can’t duplicate. Our faces and our presence at Call-On Congress turns colorectal cancer into a living, breathing issue to the men and women who decide where the money goes in the Federal budget.

I want my congresspeople and senators, and those legislators I meet in the halls of the Congressional office buildings, to remember my face when they’re voting on funding for colorectal cancer screening programs and research. I want them to look at those line items in the budgets, and see the short woman in glasses who wore a FightCRC t-shirt under her business blazer, who smiled and directly explained why their support was so valued and so needed. I want to put a face on that number.

And the only way to put a face on colorectal cancer is to do it in person.

The deadline to register for Call-On Congress is this Sunday, February 5, 2012. Will you join me and the advocates from the other 50 states in putting a face on colorectal cancer? Will you choose to make a difference in 2012?

In an effort to help patients struggling with cancer expense, the Cancer Support Community has just released Frankly Speaking about Cancer: Coping with the Cost of Care.

You can order a free print copy of the book, read sections online or download it.

The book provides information for people without health insurance and, for those with insurance, help understanding how to manage costs covered by insurance and what might be necessary to pay out-of-pocket.

As a first step, patients are urged to take an active role in finding out just what their expenses for cancer care are likely to be before treatment begins.  Practical questions are included for insurance representatives, the health care team, and pharmacists.  In addition, there are questions to ask lawyers and tax accountants.

Practical tips for coping with the expenses from the book include:

• Get a notebook to record all of your expenses, conversations with the insurance company, doctors appointments, exams, and other pertinent information (date, time and with whom, what they said and contact information, how long spent on the call).
• Get an accordion folder to help you file things so you can find them easily.
• Pick a certain day to be ‘health care bill day.’ Use this allotted time to work on the task of keeping everything organized. This will help to compartmentalize the task and keep it from taking over your everyday life.
• Identify an easily accessible place in your house that will not be disturbed by others where you can store your bills, paperwork, and other items.

In addition Coping with the Cost of Care includes things to consider about working through treatment or how to get disability payments if working isn’t an option.

Contents of the book include places to go both nationally and in your community for financial help, insurance and patient assistance programs to help with the cost of prescription medicines, and an excellent list of resources for more information and assistance.

Kathy, who is a breast cancer survivor, said,

I would’ve liked to talk at the front end about the cost of care as opposed to waiting. I really think it would have been easier if we knew what was going to happen and what bills we were going to see coming in.

Frankly Speaking about Cancer: Coping with the Cost of Care is full of solid information, excellent questions, and practical tips.  And its free!

The headlines were almost as enticing as unwrapping a large bar of Godiva with hazelnuts.

• Eating chocolate can stave off bowel cancer, say scientists.
• Chocolate shown to protect against colon cancer: study
• Study Shows Chocolate Prevents Colon Cancer

As the news spread like chocolate melting in August from a medical journal article to a news release to online media to blogs to Twitter, I didn’t know whether to consider the rats who were fed cocoa for 12 weeks and had changes in their intestinal tract or that having diabetes increases the risk of dying from colorectal cancer by 30 percent or convincing evidence from the World Cancer Research Fund that maintaining a healthy weight is linked to lowering colon and rectal cancer risk.

Digging deeper into the research that was actually done:

• The study wasn’t done in humans but in rats who bred to be at high risk for colon cancer.
• The rats didn’t get to chow down on chocolate bars but were fed plain cocoa as 12 percent of their diets.
• After 8 weeks with half the animals eating extra cocoa, the rats were given azoxymethane (AOM) which induces colon cancer in susceptible rats.
• Four weeks later there were changes in some rat colons called aberrant crypt foci, a very early change that can lead to polyp formation.
• In the rats who were not fed cocoa, there were also changes in proteins that increase cell division and reduce cell death potentially promoting growth of tumors.
• Cocoa in these experimental rats reduced the risk of developing polyps and perhaps colorectal cancer at a very early stage. The study didn’t continue to see if the little guys actually got colon or rectal cancer.
  

Can we jump from plain cocoa in high-risk rats to chocolate, with its sugar and fat, in humans in an effort to prevent colorectal cancer?

And is that the best prevention strategy?

Given that we don’t eat cocoa powder alone but with added fat and sugar, the calorie intense treats should be only that — occasionally treats at the top of the food pyramid.  Surely we don’t want 12 percent of our daily calories to come from cocoa like the rat diet. Consider:

• Hershey bar:  210 calories, 13 grams of fat, 24 grams of sugar
• Two Godiva Truffles: 210 calories, 13 grams fat, 17 grams sugar

Bottom Line: What Really Can Prevent Colorectal Cancer?

• Experts say that positive lifestyle choices could cut the number of new colorectal cancer cases in the United States almost in half — a 45 percent reduction or 64,000 people who wouldn’t get colon or rectal cancer.  Recommendations from the American Institute for Cancer Research (AICR) include not smoking, cutting down on red meat, increasing physical activity, and staying lean.
• And the best way of all — colorectal cancer screening.  If everyone followed screening recommendations, we could prevent at least 60 percent of colorectal cancers.  Stop It in Its Tracks before those polyps ever turn to cancer.  That’s true prevention, not just reducing risk in rats.
  

A few last facts to consider:

• Americans eat 2.8 billion pounds of chocolate annually, about half of all the world’s supply.  It costs us $7 billion dollars every year.
• Annually we eat 12 pounds of chocolate per person.
• The fiscal year 2012 budget for the National Cancer Institute is a little over $5 billion.
• AND in 2012, 143,460 men and women in the United States will be diagnosed with colon or rectal cancer and 51,690 will die.

There’s lots of work to do, and chocolate truffles are not the answer.

Get Screened and Get Your Friends Screened.

But side effects are more difficult.

After a randomized clinical trial comparing Avastin with XELIRI (Xeloda, irinotecan) to Avastin with FOLFIRI (5-FU, leucovorin, irinotecan), researchers concluded that excessive side effects made using the XELIRI combination unwise.

Efficacy-wise there were no sigificant differences between the two regimens for:

• median progression-free survival(10.0 for FOLFIRI and 8.9 months for XELIRI)
• overall survival (25.7 and 27.5 months)
• response rates (45.5 and 39.8 percent)

However diarrhea, fever due to low white cell blood counts, and hand-foot syndrome were significantly more common in patients treated with XELIRI. They also had more treatment delays and dose reductions, and discontinued treatment because of side effects more often.

J Souglakos and his colleagues concluded,

The progression-free survival of FOLFIRI-Bevacizumab is not superior to that observed with the CAPIRI-Bev regimen. CAPIRI-Bev has a less favourable toxicity profile, requiring dose reductions, in order to be considered as an option in first-line treatment of patients with metastatic colorectal cancer.

SOURCE: Souglakos et al., British Journal of Cancer, January 12, 2012.

Moscone Center

We’re getting ready for the 2012 Gastrointestinal Cancers Symposium next week at the Moscone Center in San Francisco.

Kim Ryan, Nancy Roach, and I will be there checking out the latest colon and rectal cancer prevention and treatment research and talking with leaders in the colorectal cancer field.

Colon and rectal cancer is featured on Saturday, January 21, but we’ll also be looking at research results for cancers in the upper digestive tract, liver, and pancreas on Thursday and Friday, visiting exhibits, and meeting with members of the Fight Colorectal Cancer Medical Advisory Board.

• Watch for our reports from the Symposium on the Fight Colorectal Cancer Research and Treatment News.
• Follow our tweets on Twitter @FightCRC.
• In February, join us and Dr. Dan Sargent from the Mayo Clinic for a Report from the 2012 GI Cancers Symposium webinar.

Each year, ASCO gives a few posters special mention as Merit Awards.  We’ll be stopping by to see those related to colorectal cancer.

• Association of NCCN guideline adherence with improved survival in high-risk stage II and stage III colon cancer.  Genevieve Boland, MD, PhD, University of Texas M. D. Anderson Cancer Center.
• A 21-year analysis of lymph node trends in colon cancer: Do quality measures really matter? Danielle Hari, MD, John Wayne Cancer Institute at St. Johns Health Center.
• Association between delays in adjuvant chemotherapy for stage III colon cancer and increased mortality. Alex Haynes, MD, MPH, University of Texas M. D. Anderson Cancer Center.
• Lymph node metastasis in patients with early pathologic T-stage rectal cancers: What does local excision leave behind? Maria Russell, MD, University of Texas M. D. Anderson Cancer Center.

Stay tuned for more breaking research information as we bring it to you.