You can save anguish and conflict when a family member is close to death by knowing what their wishes are.  You can help your family know what you want, as well.  The Engage with Grace slide helps to start the conversation

You can  download one slide from Engage with Grace to start your family’s discussion.

The slide has only five questions:

1. On a scale of 1 to 5 where do you fall on the continuum? Let me die in my own bed, without any medical intervention through Don’t give up on me no matter what, try any proven and unproven intervention possible.
2. If there were a choice, would you prefer to die… at home, in a hospital, or not sure?
3. Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness… yes or no?
4. Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near. . . yes or no?
5. Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advanced directive?

Although eight out of ten people say that it is important to write down end-of-life wishes, only about one-third have.  Three out of four Americans would prefer to die at home, but up to half of will actually die in the hospital.

Engage with Grace has asked bloggers to spread the message of using the One Slide to help families talk together this holiday about end-of-life issues.  I am glad to be part of that effort.

Have a wonderful Thanksgiving.  I am grateful for all of you . . . the work you do for cancer patients and survivors, the concern you have for your families, the courage you who are patients and survivors have in facing this illness.

And tune into Kaleidoscope at 4 pm on FOX.

Will there be a blockbuster new drug this year for colorectal cancer?  A big biomarker like KRAS was last year?  New directions in surgery? Radiation?

What’ll be in those “Late-breaking Abstracts” that no one sees until the meeting actually begins?

But even more than the abstracts, presentations, speeches, and posters that highlight research in cancer and patient care, is the chance to meet old friends and make new ones.  Nancy Roach, the C3 Board Chair, reminded me this morning of the New Orleans meeting that she and I did on a shoestring and the little French Quarter guesthouse with water that was only hot sporadically and the ceiling that fell on Nancy’s bed.

I’ve got a very nice, if not elegant, suite this year with a microwave if I had time to microwave anything, two TV’s, and a wide and comfy bed.   Best of all is the WiFi connection that keeps me in touch with my email, my blog, and my new forays into Twittering.

Yesterday was all about plunging in.  Picked up my nametag, without which I can’t get anywhere at all.  Found the Advocate Lounge, which will save my feet and life many times before Tuesday.  Got a nifty bag to carry my stuff … and there is lots of stuff to carry.

Two sessions on Friday focused on:

• Advanced concepts in clinical trial design with four excellent speakers who looked at ways to develop clinical trials that were faster, more innovative, and focused on patient variations.
• Controversial issues in rectal cancer management looked at whether tumors in the upper part of the rectum always need radiotherapy, when — if ever — is local excision right for early rectal cancer, and if adjuvant chemotherapy is necessary for stage II and III rectal cancer.

Got back on the bus at 6:00, which is the end of the ASCO day, and headed to a dinner with the FOCUS patient advocates training program.  FOCUS is run by the Research Advocacy Network and provides training before ASCO and support during the meeting for patient advocates.  It also funds registration and meeting costs so advocates can be here at ASCO.

Lots of old friends and some new ones at dinner including another woman who is just beginning her struggles with Lynch syndrome (hereditary nonpolyposis colon cancer) which has been part of my own life for the past twenty-five years . ..  much longer if I think back to my mother’s first colon cancer diagnosis when I was thirteen.

Colorado Capitol

Yesterday was lump in the throat day!

I was at the Colorado capitol  watching when a resolution was passed in both the Senate and House of Representatives declaring March Colorectal Cancer Awareness Month.  While March is recognized nationally by the United State Congress, watching it happen in one of the many states who also help raise awareness touched me and brought a few tears thinking of how far we have come in the ten years since March was first declared Colorectal Cancer Awareness Month — and how far we have to go.

March 4 was 2009 Colorado Lobby Day sponsored by the American Cancer Society Cancer Action Network, and the halls just outside of the Senate and House of Representatives were crowded with ACS volunteers meeting “in the lobby” with their state legislators.  I’m a New Yorker, but felt like an honorary citizen of Colorado — another lump in the throat as we pushed for a bill to require state insurance companies to cover the costs of routine care when patients are involved in clinical trials.

Later I spoke at a lunchtime seminar at the University of Colorado Cancer Center. During my talk I reflected on the progress we’ve made over the past ten years to make people aware that colorectal cancer can actually be prevented and to improve treatment for the disease.

There was a time a little over ten years ago that nobody talked about colon or rectal cancer.  There were no national organizations dedicated to advocacy or patient support.  Nobody crawled through giant colons or urged people to be screened.  Irinotecan had just been added to our tiny stock of armaments for fighting colorectal cancer . . . oxaliplatin, Avastin, and Erbitux were yet to come.  Medicare wasn’t yet covering colonoscopies.

University of Colorado Cancer Center

After my talk, I had lunch with researcher Dr. Al Marcus,  and RN Susan Rein, who is working to connect uninsured patients to screening as part of the Colorado Colorectal Screening Program. Although the program connects patients who need screening to doctors who provide colonoscopies, money for treatment is sharply limited.  We talked about how hard it is to find cancers through screening and struggle to help uninsured and low-income people pay for treatment.

Survivor Erika Brown took me swimming in the morning reminding me that people who have been treated for colon or rectal cancer do go on to healthy and strong lives.

Lots of work to do . . . this March, this year, and in the future.

• Make reducing the cancer burden a national priority.
• Ensure that all Americans have timely access to needed health care and disease prevention measures.
• End the scourge of tobacco in the United States.

The President’s Cancer Panel was created with the passage of the National Cancer Act in 1971. Its three members have a responsibility to report on barriers to full implementation of the National Cancer Program and make recommendations to overcome them.  Panel members responsible for the 2007-2008 Report were:

• LaSalle D. Leffall, Jr., M.D., F.A.C.S., of the Howard University College of Medicine
• Margaret L. Kripke, Ph.D., of The University of Texas M. D. Anderson Cancer Center,
• Lance Armstrong, cancer survivor and founder of the Lance Armstrong Foundation

In February 2008, President Bush appointed Joe Torre, a cancer survivor and Los Angeles Dodgers manager to replace Lance Armstrong.

Four in ten people in the United States will develop cancer at some point in their lives.  In 2008 more than 1.4 million Americans will be diagnosed with cancer and 565,000 will die.

However, despite the growing US burden of cancer, in developing the 2007-2008 recommendations for the President, the Panel pointed out disturbing trends:

• A declining cancer research budget
• Avoidable inefficiencies and poor collaboration among governmental, voluntary, industry, and academic organizations working on cancer research
• Questions about the appropriate focus and emphasis on cancer research in light of current cancer trends
• An aging and increasingly sedentary population
• A more and more fragmented and unsustainable health care system
• An increasing number of uninsured, underinsured, and underserved Americans due to a steady erosion of public and private health care coverage
• Continued tobacco use, reduced cancer control funding, and increased tobacco marketing targeting young people, women, and other vulnerable groups
• Complacency and a lack of understanding and sense of urgency among policymakers, the research and health communities, and the public about the growing burden of cancer

In their Executive Summary, the Panel challenged Americans and their leaders to make cancer an urgent priority saying,

It no longer is acceptable to say that because cancer is complex, disparities in care are entrenched, and the tobacco companies are powerful, we cannot solve the problem of cancer in America. We can. But to do so, cancer must become a national priority—one that is guided by strong leadership; fueled by adequate funding and productive collaboration and compromise among governments, industry, and institutions; and embraced by individuals who understand and accept their personal role in preventing cancer and in demanding meaningful progress.

Thoughts from Kate

I am one of that forty percent of Americans whose life has been touched by cancer — too many times in my own life and that of my family and friends.

I welcome the strong words of the President’s Cancer Panel, and I hope that despite the frightening financial crisis we find ourselves in, the pressure of two costly wars, and a change in Washington leadership, we will listen and learn!

By letting government funding for cancer research stagnate, we are literally eating our seed corn.  There is exciting research going on, but it cannot continue without the brains and vision of young researchers.  However, as the Panel points out, they are being forced out of cancer research by dwindling funding and lack of opportunities for their careers to grow.

We know how to prevent many colorectal cancers and find others early . . . but millions of Americans cannot access the simplest screening tests because they have no insurance.

Cancer is a war that we can win.  I believe that with my whole heart, and I spend many hours each day working on the struggle to win it.  I urge you all — citizens, researchers, legislators, President — to join Dr. Leffall, Dr. Kripke, Lance Armstrong, Joe Torre and me in the fight.

Wherever you are in this tough journey that is cancer, I hope you can take some time out to watch fireworks or listen to bands or eat a hot dog and just have fun.

July is a special month of celebration for me, and it is even more so this year.  Twenty-five years ago I was first diagnosed with colon cancer.  Those were the days of surgery and not much else.  5FU could add some time, but mostly we had to depend on the surgeon’s skill and hope the tumor hadn’t spread too far.

Last year on the Fourth, I had just left the hospital with another colon cancer diagnosis.  Again, I needed good doctors and nurses, and I had them.  This time there were many more and much better treatments available.  We’d come a long way in those twenty-five years.

Twenty five years, one big year, and cancer-free!  Independence indeed!

June was a travel-crazy month for me.  I was in Chicago for the huge ASCO meeting with 30,000 people all working on an end to cancer.  I was at meetings of RTOG and NSABP, two cancer cooperative groups that plan and carry out research to reduce suffering and death from cancer.  Finally, I spent several days in Washington with caBIG, an effort to provide the computer technology to tie all this research seamlessly together so scientists can share data and images and ideas.

NSABP — National Surgical Breast and Bowel Project — was celebrating too.  This is their fiftieth anniversary.  RTOG — Radiation Therapy Oncology Group — wasn’t far behind.  They’ve been fighting cancer with research for forty years.

caBIG — the Cancer Bioinformatics Grid — is much younger, but represents the huge advantage technology has given us in this battle for independence from cancer.

I’m grateful today to the research, to the doctors and nurses and technicians, and to the patient advocates who have given me my life and the strength to be part of this huge research enterprise.

It is work for all of us full of life and energy and courage.  Which is what I wish for each of you this Fourth of July.

Finally, I want to thank the very brave men and women serving in our armed forces this Independence Day.  Thank you for your service. Be safe.

Happy Fourth.

Kate

Some thoughts from Kate Murphy. . .

We’ve known for a long time that cancer isn’t one disease and that colorectal cancer isn’t one disease either.  Too often the only way to know if a treatment would work for a patient was to give it to them and wait.  Meanwhile, the patients struggled through side effects, not knowing if the treatment was going to really help or not.  And — even worse — lost valuable time that might have been spent with a more effective therapy.

Probably the most important theme at ASCO this year for colorectal cancer is that we now have real tools to target the right therapy to the right patient.

On Sunday at the Plenary Session — the big meeting for everyone where the most important cancer breakthroughs are discussed — Dr. Eric Van Cutsem presented the results of the Crystal trial with a special focus on KRAS. Crystal randomized patients who had not be treated for metastatic colorectal cancer before to FOLFIRI or FOLFIRI plus Erbitux® (cetuximab).

KRAS is a gene that contributes to the division of cancer cells and the growth of tumors.  In about 35 to 40 percent of colorectal cancer patients, it is mutated. Other patients don’t have this mutation, and their KRAS is normal or wild type. While patients with wild type KRAS benefit when Erbitux is added to FOLFIRI, patients with mutated KRAS don’t.  They have no better response or progression-free survival.  Testing tumors for KRAS mutations before beginning treatment with Erbitux avoids futile treatment with its unnecessary side effects and disappointments.

Other research discussed on Saturday also showed that people with KRAS mutations just don’t benefit from Erbitux or Vectibix™ treatment, either in first-line treatment with FOLFOX or in later therapy.

The good news is that people with no mutation in KRAS (wild type) may have better outcomes than we previously thought.  Overall results from the CRYSTAL trial included both people with mutated and wild type KRAS.  But when just wild type patients were analyzed, there was better response and progression-free survival. Dr. Van Cutsem urged that patients be tested for KRAS before deciding on treatment for metastatic colorectal cancer.

In the morning, I met with several researchers who had colorectal cancer posters for discussion.  Posters provide more detailed information about research being presented at ASCO than the brief abstracts.

A break at lunchtime gave me a chance to sit with other C3 staff and board members behind the C3 booth in the Exhibit Hall.  Judi Sohn, Vice President for Operations, maintains the booth and provides information about C3′s work to people attending ASCO.  She cheerfully hands out Cover Your Butt bracelets and C3 flyers and newsletters and answers questions.

Another long day . . . but one with important breakthroughs for people with colon and rectal cancer.

Some thoughts from Kate Murphy. . .

A very full day at ASCO.  I began with by stopping for juice and a muffin in the Advocates’ Lounge, which is a special service provided by ASCO through their programs for people living with cancer via Cancer.Net. Advocate participation in the ASCO Annual Meeting is encouraged with scholarships, the Advocates’ Lounge, and special booth in the Exhibit Hall.

A somber but very meaningful first session on The Path to Self-Healing: Delivering Bad News designed to help oncologists learn how to help their patients find meaning in difficult diagnoses at the end of life included a wonderful documentary by Ruth Yorkin Drazen featured the life of Dr. Peter Morgan, a young oncologist with sarcoma.

“My spirits are soaring,” Dr. Morgan wrote in his diary the day that he returned to caring for patients on crutches and with a cap covering his mostly bald head.  

The film reminded me that helping people with cancer isn’t all about providing technical details but helping them move from suffering to healing, even when healing doesn’t mean the cancer is going away.

A bus ride through Chicago for a meeting about how to encourage patients to enroll in clinical trials gave me time to reflect on the Drazen film, rest in a comfortable seat, and think about how Chicago’s skyscrapers are the tall, strong bones of the city.  There is strength here at ASCO, as well as excitement.

The afternoon focused on lots of technical details!  Much focus in colorectal cancer this meeting is on the biomarkers that predict whether or not patients will benefit from certain treatments.  Rather than seeing broad new treatments this year, we’ll learning that colorectal cancers differ from each other.

A drug that can be spectacular in preventing recurrence or extending life in one person may do nothing at all for another tumor.  For years, the only way to know this was by trial and error, but new techniques are letting us measure expression of genes such as K-RAS to predict patients who will get no benefit from certain treatments.  We can then avoid wasting precious time with them, along with their side effects and expense.

The day ended with a very long, but important, session highlighting key colorectal cancer research.  I’ll be sending you more specific information about these studies.  Briefly, information included:

• After five years of follow-up fewer recurrences continue when oxaliplatin is added to 5FU for stage II and III colon cancer.  There is a trend toward better overall survival.  This study (NSABP C-07) uses bolus 5FU rather than the continuous infusion method in the MOSAIC clinical trial.
• Adding Avastin (bevacizumab) to FOLFOX for stage II and III colon cancer treatment appears to be safe (NSABP C-08) with no significant increases in serious side effects including GI perforations, bleeding, arterial blood clots, or death.  Safety follow-up is continuing, and information about whether the new treatment is more effective will be available in about two years.
• Improvements in survival time after a recurrence is detected have weakened the link between 3 year disease-free survival and 5 year overall survival.  We may need to be following up longer to find that statistical improvement.
• Patients whose tumors are the result of deficient mismatch repair genes don’t benefit from 5FU based treatment for stage II and III colon cancer. In some cases it may actually reduce survival. Testing for mismatch repair status before starting treatment is important for decision-making.
• Intravenous calcium and magnesium protects against peripheral neuropathy from oxaliplatin treatment and doesn’t reduce treatment effectiveness.
• Adding Erbitux (cetuximab) to FOLFOX and Avastin (bevacizumab) for first-line colorectal cancer treatment did not improve outcomes and, in some situations, actually decreased effectiveness. (CAIRO 2 study).
• In the CONcePT trial, giving oxaliplatin intermittently increased the time that patients remained on treatment resulting in a trend toward better progression-free survival.  Calcium and magnesium infusions reduced neurotoxicity and the number of patients who had to stop treatment because of neuropathy.  No reduction in effectiveness was associated with calcium and magnesium.
• Initial safety information from a randomized study of radiofrequency ablation and chemotherapy found no safety problems using the two treatments together.
• Adding irinotecan to infused 5FU after surgery for liver metastases did not appear to have an overall advantage.

Watch the C3 Research and Treatment News for more specific information about each of these ASCO presentations in the coming week.

Very tired, footsore, but excited and encouraged, I got back on the bus for my hotel and a comfy bed to prepare another day at ASCO.

Some thoughts from Kate Murphy . . .

I’m in Chicago for the 2008 American Society of Clinical Oncology meeting.  It’s huge!  More than 30,000 doctors and researchers from all over the world here to find out about the latest cancer research.

The convention center is huge, the big full of research abstracts is huge, the ideas are the biggest of all.

I’ll try to send new information along to you, as well as share some of my own impressions during the next few days here.

My feet hurt!  I got up a little after 4 eastern time this morning to drive to the airport.  Bad weather kept us stuck in New York for several hours, so I was late getting here and hungry!  Cashews and diet coke didn’t make a very filling lunch.

I checked into the hotel, left my bags unpacked, and took a shuttle bus over to McCormick Place where dozens of meetings — some very large, some smaller are held, all at the same time.  It seems like miles between bus drop offs and registration sites and sessions.  People are everywhere, riding escalators from level to level, making their way through the three giant buildings that make up the McCormick Center.

Amazing to sit with thousands of doctors listening to the top specialists in the world talking about treating colon cancer that has spread to the liver — a medical oncologist, a surgeon, and a radiologist.  All made the same very important points:

• Treatment for liver mets is changing.  The old rules just don’t apply anymore.  More people can be treated, more people can be cured.
• A multidisciplinary team is critical right from the beginning.  Medical oncologists need to be talking with surgeons and radiologists, making a plan together.

No one hotel would ever hold this big crowd.  We’re staying all over Chicago, shuttled from our hotels to  the convention center by a fleet of buses.

At the end of the day, my sore feet and I limped onto a bus to have dinner with a great bunch of patient advocates who have been learning about research via webinars in preparation for the ASCO meeting.

More impressions tomorrow.  Watch the the  C3 site — FightColorectalCancer.org — for ASCO research updates and more of my adventures at ASCO.

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