Recent studies show some promise in understanding chemo-caused neuropathy, and perhaps in using a common medicine to ease the worst symptoms in some people.

Study shows neuropathy relief for some using antidepressant

 A well-designed clinical study has provided the first evidence that the antidepressant Cymbalta® (duloxetine) can provide some patients with significant relief from peripheral neuropathy caused by chemotherapy.

From 20 to 40 percent of cancer patients given neurotoxic chemotherapy–taxanes, platinum-based including Eloxatin® (oxaliplatin), vinca alkaloids, bortezomib–will develop painful peripheral neuropathy (numbness, tingling, burning in hands or feet). If the pain is severe, colorectal cancer patients often have to reduce the dose or stop taking Eloxatin. Even then, this painful condition can persist for months, even years, after chemotherapy is stopped.

Previous studies have found that Cymbalta eases the neuropathy pain caused by diabetes, but this is the first comprehensive trial testing whether Cymbalta could ease neuropathy from chemotherapy. As reported in the April 3, 2013 JAMA (Journal of the American Medical Association), the trial enrolled 220 patients at 8 different cancer centers across the U.S. who still had significant neuropathy (at least 4 on a pain scale of 10) at least 3 months after chemotherapy. (Over half, 129 patients, had taken Eloxatin, mostly for colorectal cancer.) In this randomized, double-blind (neither patients nor clinicians know who’s getting the test drug), crossover trial, one-half the group received Cymbalta for 5 weeks while the others took a placebo, and then the groups switched treatments.

Of those taking Cymbalta, 59% reported at least moderately decreased pain (minimum 1 point on the 10-point scale)—usually within the first week. Among those taking a placebo first, 38% reported decreased relief. Interestingly, Cymbalta-associated pain relief was significant only in feet, not hand, symptoms. Also, 11% of people taking Cymbalta had to stop due to side effects—mostly severe fatigue.

Experts theorize that the antidepressant might help because it reduces the neurotransmitters serotonin and noradrenaline, which deliver pain messages to the brain. The study authors pointed out limitations in this first study: relatively small numbers, the effects measured by patient self-report, and the study only followed patients for 5 weeks on Cymbalta.

However, “This is not just about improving quality of life by decreasing pain, but potentially it’s helping patients live longer because they can get their full chemotherapy treatment,” noted lead author Ellen M. Lavoie Smith, Ph.D., APRN, AOCN, of the University of Michigan Comprehensive Cancer Center.

Another expert not connected to the study, Marie Bakitas, D.NSc., at the University of Alabama at Birmingham School of Nursing, noted that the trial results weren’t surprising, because duloxetine is already being used in clinics. But, she also told Medscape, other treatments such as physical therapy, acupuncture and massage “are often neglected but can be very useful.”

Sources: “Effect of Duloxetine on Pain, Function, and Quality of Life Among Patients With Chemotherapy-Induced Painful Peripheral Neuropathy,” April 3 JAMA Network; “Drug for Depression Mutes Chemo Nerve Pain,”April 2 Medscape; “Antidepressant helps relieve pain from chemotherapy, study finds,” April 2 Univ. of Michigan Health Systems press release.

Searching for genes that could predict peripheral neuropathy

 Mayo Clinic researchers have reported that they’ve found that patients with mutations in  three specific genes were more likely to suffer peripheral neuropathy from chemotherapy.

Currently, doctors have no way to predict who will have the side effect, how severe it will get, nor how long it will last.

At the recent meeting of worldwide cancer researchers (AACR, or American Association of Cancer Researchers), scientists described how they studied more than 20,000 specific genes in 119 patients—over half of whom had developed peripheral neuropathy during chemotherapy. They pinpointed three genes, in which mutations were clearly associated with developing neuropathy. Their next step will be to expand their study of the entire genome in as many as 1000 patients. The ultimate goal would be to use these types of genetic clues to potentially predict which patients might suffer side effects from specific drugs.

Fight Colorectal Cancer’s Board Chair Nancy Roach noted that these first findings are a long way from proving cause-and-effect, creating a test, and actually being able to get a reliable test to doctors and patients.

Source: “Gene Variations Predict Chemotherapy Side Effects,”April 9 2013 Science News.

Disclosure: Fight Colorectal Cancer has accepted funding from Sanofi, manufacturer of Eloxatin, in support of its programs. Fight Colorectal Cancer has ultimate authority over website content.

Last week, National Siblings Day took the Facebook feeds by storm! And in the spirit of celebrating sibling love, I wanted you to meet two sisters who came to the 2013 Call-on Congress. They are precious women who used the advocacy event to honor and remember their mom.

Here is their story.

Sisters Michelle (left) and Casey (right).

Maybe I came too soon…

You might remember the woman I referenced in the Monday recap from the Call-on Congress. As I floated around the room I met one woman whose tears prevented her from sharing her story.

A day or so later, I sat down with her and her sister to learn about what brought them to the Call-on Congress.

Michelle and Casey lost their mother to colorectal cancer in February. They noticed information about the 2013 Call-on Congress and thought advocacy would be a good way to make a difference and prevent others from suffering.

Initially, as first-timers to the event, they wondered if they’d come to advocate too soon…. just a little over a month after their mother’s passing.

But as they learned about the impact research and funding can have on fighting disease, their loss fueled them to share their stories on The Hill and carry their mother’s strength into congressional offices.

Mom was so strong…

The family at a GYRIG race last year, Mom wore the “S”, Dad wore the “T” and each sibling wore the other letters.

The girls showed tremendous strength as they told Congressmen and other advocates about their mom.

Strength they attribute directly to her.

As the winners of our Week #1 March Facebook photo contest, they shared a photo depicting the importance of being STRONG in their family.

At a Get Your Rear in Gear event in Fort Myers, Florida the family created Team STRONG.

The girls’ mom and dad, as well as each sibling, wore one letter making up the word “Strong.” Their mom wore the “S”, Dad wore the “R” and then the rest of the siblings wore the other letters. (With a cousin filling in for their brother.)

“We aren’t strong without one another,” Casey explained. “It takes all of us to have strength.”

Each family member was assigned a letter to carry with them as their mom faced the disease.

At the Call-on Congress, the sisters each pulled out necklaces with their letter, explaining that they wear them everyday, keeping their mom’s strength with them everywhere they go.

Carrying on mom’s legacy

As a survivor, I often feel a heavy burden to “give back” and “do something” since I am fortunate to still be here. But not until I met these women did I realize that family members who’ve lost a loved one carry these burdens, too.

I am so thankful that these daughters (and actually, moms themselves) found the Call-on Congress and decided to come, although their grief is still fresh and they have young kids at home. I’m thankful that families touched by colorectal cancer have a way to DO something about it – and demand a change.

That’s precisely what these sisters did at the Call-on Congress.  And that’s exactly what our team will continue to do.

I’ve never served in the military but I can only imagine what soldiers go through the night before they leave for deployment or battle.

Years of training and preparation lead up to the big day. It’s the military-version of starring on Broadway. It must feel similar to tonight – the hours before we hit the Hill during the Call-on Congress.

The fight against colorectal cancer feels like war sometimes. Battle after battle (or doctor’s visits, scans, surgeries and procedures) create a war on many fronts… whether you’re the patient in the hospital bed or the loved one holding their hand.

But after a day like today’s Call-on Congress, those of us in the fight feel like soldiers.

We’re prepped and ready to take action when it comes to legislation. We understand after today that Capitol Hill needs to get involved if we are going to win this war.

And tomorrow, it’s time to show them why.

Recognizing the research at stake

Yesterday we heard an overview of the importance of research. We received encouragement to channel our passion into advocacy. (Read the Monday recap.)

Today, we got into the nitty-gritty.

Clinical trials offer hope

Dr. Johanna Bendell (Director of Gastrointestinal Oncology Research at the Sarah Cannon Research Institute) delivered a presentation that:

• Explained the advancements in clinical trials and potential treatments on the horizon.
• Emphasized the importance of clinical trials.
• Offered explanations to big concepts in the colorectal cancer world in terms of biomarkers, pathway signaling, inhibitors, gene expressions and more.

Ultimately, she offered passionate insight into colorectal cancer research and treatment options. She injected hope that life-saving therapies sit on the horizon as research continues to receive funding and evolve.

Check out all of the slides to Dr. Bendell’s presentation

Survivorship studies involve millions

Andrea Dwyer (Project Director for the Colorado Cancer Prevention and Control Research Network) followed Dr. Bendell with insights into survivorship research. She showed the crowd:

• A population created by 1 million colorectal cancer survivors and the near 13 million cancer survivors.
• Efforts of researchers studying the transition from active treatment to survivorship.
• Benefits of a cancer registry.
• The impact of budget cuts on survivor research.

Andi encouraged a crowd of survivors and families that resources from survivorship studies will become available with ongoing survivor research.

Check out Andi’s presentation slides.

An Afternoon of Advocacy

Survivors swimming in the details after a morning of powerful presentations knew the clear message of our efforts:  We NEED research in order to find a cure for colorectal cancer. We NEED federal funding.

Fired up with facts (and a good dose of hope), we learned how to best deliver this information to Congress for the remainder of the afternoon.

Advocates sat through discussions, presentations and break-out sessions that discussed topics like:

• The Research Process
• The Legislative Process
• Importance of Engaging in Networks
• In-depth review of 2013 Legislative Priorities
• How to Prepare for the Hill
• How to tell our Stories and Prepare for Pushback
• How Congress Really Works

Thanks again to all of the speakers who participated:

• Nancy Roach (Chair & Founder of Fight Colorectal Cancer)
• Andi Dwyer (Project Director for the Colorado Cancer Prevention and Control Research Network)
• Dan Dixon, PhD (Associate Professor at the University of Kansas Cancer Center)
• Mary Doroshenk (Director of National Colorectal Cancer Roundtable)
• Camille Bonta (Fight Colorectal Cancer Policy Expert)
• Carlea Bauman (President of Fight Colorectal Cancer)
• Anjee Davis (VP of Programs for Fight Colorectal Cancer)
• Michael Sola (VP of Operations for Fight Colorectal Cancer)
• Devin James (CEO of Devin James Group)
• Christoper Kush (President of Soapbox Consulting)
• Martin B. Gold, MPA, JD

We’re Ready for the Hill

A packed agenda of research and policy meetings made for a long day.

But we did get cupcakes in the middle of the afternoon. How sweet.

Tonight, we soak in the policies. Rehearse our stories. Recite the “asks.” Take deep breaths.

Because tomorrow… it’s showtime.

We’re ready to ask for change when it comes to fighting colorectal cancer and federal funds.

We’re here to demand a cure.

Connect With Fight Colorectal Cancer

Want to see more from Day Two – 2013 Call-on Congress?

Read our Twitter and check out Facebook.

Look for hashtag #ConC2013 or tags from @FightCRC

Share your story on the One Million Strong blog and take the One Million Strong pledge.

A small group of advocates from Virgina sat in a circle. Tasked with telling their stories, each took turns explaining what led them to the 2013 Call-on Congress.

A girlfriend of a survivor who passed away several years ago kicked off with her story.

Then two colorectal cancer survivors chimed in.

A Fight Colorectal Cancer staff member explained what led her to taking a job at the organization.

And then, the circle got quiet.

As a young woman sitting next to me tried to speak, her eyes welled up and tears streamed down her face. Although she never managed to tell her story, we all knew she came in memory of someone dearly loved.

Someone who fought colorectal cancer. Someone who’s story is about to be told on Capitol Hill this week.

“If you are not taking up time with your members of Congress, nobody would be. Nobody up on Capitol Hill would be talking about colorectal cancer.” – Carlea Bauman, President of Fight Colorectal Cancer

Research Saves Lives and Money

We kicked off the 2013 Call-on Congress with a brief overview of the federal budget.

Way to start in lightly, huh?

But our presenter, Max Bronstein, MPP, from Research!America did a fabulous job of simplifying the complex system and process we face.

Max explained the federal budget, federal spending and the importance of allocating funds to medical research. Some of his main points and highlights included:

• The public is EXTREMELY supportive of medical research.
• The National Institute of Health (NIH) receives less than 1% of the federal budget.
• Current-day sequestration is cutting programs invested in cancer research.
• The budget crisis is creating a very challenging environment for researchers who run massive research programs without knowing their budgets.
• We should urge Congress to compromise and make a long-standing deal.

Check out the slides from Max Bronstein’s presentation.

Max ended with great encouragement to our team of colorectal cancer advocates:

• Advocacy is patriotic.
• We are ALL patients.
• Research needs you. (Research is in big trouble right now and faces the biggest threat it’s ever seen. If we’re not out there advocating for federal funds to go to research, the problem will get worse.)
• The right advocate at the right time can make a HUGE impact.
• Advocacy determines priorities.

“Congress determines what’s important by hearing from constituents. Advocacy determines priorities.” Max Bronstein, MPP, Research!America

We are Winning.

Max clued us into the reality (and crisis) of research funding and how it relates to colorectal cancer.

Rodrick Samuels – he got us fired up.

As the owner of Profile Barber Institute & CRC advocate, he gave an energetic presentation that included “repeat after me’s,” and audience participation. (Oh – and he happened to throw in a lesson on how to properly describe hair-cutting scissors … I mean shears.)

A passionate man honoring his late mother through his efforts, Rodrick showed the crowd how anyone can channel their passion and position for disease advocacy.

He encouraged everyone to remember:

• We are winning. We are strong.
• What we push for makes dollars and sense.
• We will comb for a cure and cut out colorectal cancer.

“There is nothing in this world I can’t do nothing about – even if it’s adjusting myself in an unpleasant situation so it doesn’t steal my spirit.” – Rodrick Samuels

What an awesome speaker to get us fired up!

Wrapping up Day One

A mix-and-mingle with cocktails and dinner filled the evening. Advocates swapped more stories and found common bonds with one another. An encouragement from Mike McConnell (father-in-law of Lady Antebellum’s Charles Kelley) rounded out the evening.

Goosebumps lined our arms by the time Mike finished his impromptu speech.

Heading into tomorrow…

As many echoed throughout the day, the Call-on Congress is more than a set of meetings and training. It’s an introduction into a new family.

Whether we’re here for ourselves, the survivor in our lives or the loved one whose memory still brings us to tears, one thing is clear after today-

We are strong.

We will make sure Congress knows all about us.

Connect With Fight Colorectal Cancer this Week

Want to see more from Day One – 2013 Call-on Congress?

Read our Twitter and check out Facebook.

Look for hashtag #ConC2013 or tags from @FightCRC

Share your story on the One Million Strong blog and take the One Million Strong pledge.

Tips From a Member of Our Medical Advisory Board

Al B. Benson III, MD, FACP FASCO is Professor of Medicine, Feinberg School of Medicine,  and Associate Director for Clinical Investigations, Robert H. Lurie Comprehensive Cancer Center, Northwestern University

One of the nation’s most respected experts in colorectal cancer, Dr. Benson has supported and worked with Fight Colorectal Cancer for years as an active member of our Medical Advisory Board.

Written by Dr. Al Benson, March 18 2013, Chicago, Illinois

Although March is Colorectal Cancer Awareness Month, this disease is so frequent yet in most cases preventable that we should be striving every month of the year to make even more people aware of the importance of colorectal cancer and colorectal cancer screening. The good news is that we are seeing a trend that showing more people are getting screened and more people are surviving this disease. Even so, we have much more work to do to prevent and treat colorectal cancer.

Important information to know – from screening to diagnosis for colorectal cancer:

1) Know your family history. In some cases, colorectal cancer risk is inherited and the genetic risk can be passed on to generations within a family. For those with a risk for inherited colorectal cancer, genetic counseling and testing is strongly recommended. Also if you have an immediate family member who has had colorectal cancer, your risk for developing the disease is greater. Let your doctor know about the details of your family history. If you are unsure of your family history, discuss it with your relatives to be as complete as possible.

2) If you are of African-American descent, you are potentially at higher risk for developing colorectal cancer and screening should begin earlier, at age 45.

3) There is growing recognition that obesity, diabetes and lack of exercise are contributing factors to the risk of developing colorectal cancer and these risks should also be discussed with your doctor.

4) Talk with your doctor if you experience bleeding from the rectum. Many people assume bleeding is “just hemorrhoids,” which might be true, but it also could be a sign of colorectal polyps and/or cancer. Discuss any bleeding with your doctor as well as other symptoms including change in bowel habits (e.g., recent but persistent diarrhea and or constipation), persistent abdominal pain, weight loss or loss of appetite, or increasing fatigue.

5) If you are diagnosed with colorectal cancer, make sure you ask which members of the medical team will be important for your care. A gastroenterologist, surgeon, medical oncologist, radiation oncologist (for rectal cancer), nurse, nutritionist, psychologist, social worker, financial counselor, genetic counselor are some examples of team members who you may really need to help with your diagnosis and treatment.

6) Ask if you are a potential candidate to participate in a clinical trial. All of our current therapies and advancements in the treatment of colorectal cancer have come about because people through the years participated in a clinical trial. Oncologists consider clinical trials to be one component of the standard of care. Further advances in colorectal cancer treatment will require many people willing to enroll in our clinical trials.

7) There are resources available for you. Fight Colorectal Cancer has great information available for you. The National Comprehensive Cancer Network (NCCN) has created guidelines for treatment used around the world by health care professionals. There is a patient version of colorectal cancer guidelines  that you can obtain on the internet and bring to your doctor.

I hope some of these tips will offer you and your family some additional guidance as we continue our efforts to control this common cancer.