Today is Rare Disease Day


The most satisfying aspect of my job is when I meet a patient who is suffering from a rare disease that until very recently was untreatable, but which today can be treated with a newly-approved medication.

Last May, at my organization's annual dinner, we invited four patients to come to the podium to discuss their diseases. They then made presented awards to the presidents of the companies that had developed a new drug already being used to treat their disease. I saw tears come to the eyes of the people attending the dinner.

We all know one or more people who are alive today because of the remarkable medical advances made very recently. This includes the many new treatments for both rare and more common cancers. The latest report from the American Cancer Society noted that between 1991 and 2010, there was a 20 percent decline in the overall death rate from cancer. The organization that I head, the National Organization for Rare Disorders (NORD), focuses on patients with a rare disease, which is defined as a disease that affects 200,000 or fewer patients in the U.S. Many rare diseases are cancer, and as we learn more about cancer, more and more will be classified as "rare."

This week is a special week for all patients with a rare disease, as Friday, Feb. 28, is commemorated around the world as Rare Disease Day.

We designate the last day in February as Rare Disease Day because every four years, when there is a leap year, the last day of the month is February 29. It truly is the rarest date on the calendar.

This year, my thoughts turn to the remarkable progress we are making in developing new treatments. Cancer research is especially exciting. Cancer immunotherapy – using the body's own immune system to fight cancers – promises to lead to new therapies for solid tumor conditions such as melanoma, non-small cell lung cancer and bladder cancer.

At NORD, we rededicate ourselves this week to the tasks that are especially critical for the 30 million Americans with a rare disease. Five tasks stand out:

1. Supporting research for rare diseases, including cancers that are rare. It is ironic that we are on the cusp of so many scientific advances, at a time when the research dollars are becoming scarcer. At NORD, our goal is to support the federal and private commitment to medical research.

2. Enhancing the capability of physicians to diagnose rare diseases. Most physicians have little experience in diagnosing a rare disease, some of which affect a handful of people. For many diseases, it can take half a dozen years, or more, before an accurate diagnosis is made. At NORD, we support systems that provide broader education for physicians in enabling them to diagnose rare diseases more quickly and with greater accuracy.

3. Expediting clinical trials. Testing new treatments is always time consuming, especially when little is known about a disease, and when there are few patients to test. At NORD we are committed to increasing our knowledge about how a rare disease naturally progresses, with no intervention or with existing interventions, because we can then more easily assess the effectiveness of a new treatment. And we also have established networks of patients with rare diseases so that recruitment for clinical trials can be expedited.

4. Expediting new drug approvals. We are fortunate to have officials at the FDA who understand that, sometimes, it is not feasible to test a new treatment for a rare disease the same way that a treatment for a common disease would be tested. The FDA has demonstrated great flexibility in assessing new treatments for rare diseases, and we at NORD support that spirit.

5. Assuring access to new treatments. Our health care delivery and reimbursement systems are changing. There are more patients entering the system, and better and more expensive treatments are being developed. At NORD, we can committed to working with insurers -federal, state and private – to assure that new treatments become available in a timely way. At NORD we also pioneered patient assistance programs that enable patients in need to receive the support they need.

One more thought as we commemorate Rare Disease Day, and that has to do with the new empowerment of the patient. We are seeing more and more personalized drugs – drugs that are created for an individual patient. As personalized medicine becomes a reality, patient involvement in the development process becomes ever more important. The word that I use is "patient-centricity." We at NORD are committed to making the patient the center of the health care system.

I hope that everyone who is concerned about medical advances – and that should be every one of us – takes a few minutes this Friday to think about Rare Disease Day, and about the progress we have made, the progress we are making, and the challenges that remain.

Peter L. Saltonstall is the president and CEO of the National Organization for Rare Disorders (NORD), a nonprofit organization representing the 30 million Americans with rare diseases. Learn more about NORD at


With rare cancers, information and support can be hard to find


Les Mahler

Most any diagnosis of cancer is filled with worry and bad thoughts, but when the cancer diagnosis comes with the words that it's a rare cancer, the words are more than devastating, they're horrifying and nerve-racking.

How rare, what's the prognosis, why me, what did I do, what can be done and what are my odds or chances on recurrence and dying?

At least that was my reaction when I was told in 2007 that the tumor behind my right eye was adenoid cystic carcinoma; the more difficult part was the pronouncement by the oncologist that the cancer was incurable and fatal. "You will certainly die because of the cancer."

Wow, could it have been told in a gentler way, without the windows closed and dark curtains drawn all around?

After the surgeons and oncologist left, I took a half hour to myself and cried, uncontrollably. I needed that time to understand the magnitude of what had been said to me, and then I straightened up, took a deep breath, looked around and realized I was still alive and the cancer was just a disease like any other disease. All I had to do was find out more about the cancer and try to live life as best as possible.

The problem was gathering information about adenoid cystic carcinoma is that there's such scant information out there. Plus, what information is out there is sometimes so outdated and wrong.

For example, how many people are diagnosed each year with ACC, is it 1,200 or 1,500 or a lesser number? And what are the survival rates in terms of years? Different sites, different information. I wondered should I just pick my own numbers.

The other problem was finding an oncologist who had at least some experience with this type of cancer. The first one put it very bluntly, "30 years as an oncologist and you're my first ACC patient; I can't help you."

The second oncologist put it more mildly, "I know nothing about your cancer. I'm flying blind and learning as we go along. You probably know more about this cancer than I do."

My third and current oncologist hasn't said what he knows about this cancer, which I guess is good. During a visit, I did ask him if he's treating me like any other cancer patient, wondering if this cancer is different than other cancers.

It sure looks as though he's treating my cancer like any other cancer, with the standard six months between tests and check-ups.

I did pick five years as the starting number for survival rates; that sounded good but by 2012, a new tumor had been found pushing against the brain. It actually started growing in 2011 but it was missed, even with the MRI and contrast.

My oncologist gave me the bad news, there's nothing that can be done, surgery is out because the tumor had grown around a major blood vessel. If we tried surgery, I would die on the table. Oh, not good.

Chemotherapy has never been and was not an option with ACC because the cancer is so relentless.

It was almost as though the oncologist didn't have an answer; that he was at the end of the rope: and then, one last hope, radiation. But how much and how long, and would it be safe considering I had had radiation in the same general area in 2007; plus, this time there would be radiation to the brain. Thank God for Stanford.

Their recommendation, eight weeks of daily radiation and all will be good to go. Of course, with this cancer there is no good to go, ever.

On Jan. 2, news came that a growth had been found in the left lung; for now it's all observation and then a fine needle biopsy (I had that done for the eye in 2007, so no worries there).

What I've discovered in my cancer journey is that there is no ready-set information about adenoid cystic carcinoma. Yes, it is a rare cancer, and as such, there is little information out there on how to treat it and what to expect.

Also, there is little research being done leaving ACC patients to wonder why? Is it because this cancer affects so few? I know many ACC patients feel like we're the pariah, the black sheep of the family. I have noticed that ACC patients themselves have started their own websites for information on this cancer; only we understand what we're going through so it would stand to reason that we'd reach out to help each other.

We have several sites on Facebook, where we exchange information and often support each other as we fight this cancer; the sad part is so many new people are joining these sites and then there are the ones we say goodbye to...too often and too many. As for me, I am spending time with childhood cancer patients and helping raise funds for research.

Les Mahler is a journalist, copy editor, song writer, children's story writer, photographer, and an adenoid cystic cancer survivor since 2007. He's on his third fight against ACC.


Silicone implants and a pouty lip


Carrie Corey

No, I'm not a celebrity – I'm a breast cancer patient.

For people living with metastatic disease, oftentimes medicine side effects are worse than the symptoms of the cancer itself, and such is the case for me today.

Two weeks ago I started taking a new drug (Afinitor) that studies have shown can dramatically increase patients' response time to my current medication (exemestane). As with any new drug, my medical team went over the side effects before writing the prescription; I admit I've somewhat started tuning that part out – it makes me feel like I'm watching a TV commercial for an erectile dysfunction drug. "Yuck!!! Who would want to take that?"

For me, when we're talking about LIFE-SAVING medicine, the benefit will almost always outweigh the negative side effects. I don't mean the debilitating side effects, I mean the manageable ones: I've lost my hair twice, I've had black fingernails, lost toenails....blah, blah, blah... diarrhea or constipation? Fatigue, aches and pains? You know the drill. If the drug works and gives me the quality of life to enjoy being a wife and a mom, I'm in. And so we start down the new path.

Now, when cancer drugs say you might get mouth sores or a rash, they don't mean an annoying cold sore or an itchy hand like "normal" folks might complain about. They mean painful, fire-breathing mouth sores and a rash that makes you want to scratch your skin off. While I don't have the rash on this one, I am not exaggerating about the mouth sores. The sore is inside my mouth, but my bottom lip is so swollen it looks like I was punched in the face.


When I dropped Henry off at school this morning, Chris was paranoid the teacher would think he is an abusive husband. It is HUGE. I am talking with a lisp, and I can't even sip my morning coffee without dribbling all down my shirt. Good times!

Like most aspects of cancer, there's also a mental battle going on here. My pride tells me I can do anything I want to do – that cancer doesn't have a hold on me. So I am determined to keep taking a good drug, even if it means dealing with some annoying side effects.

But I can hear the words of my oncologist's nurse, reminding me I can easily land myself in the hospital if side effects get out of control. Or worse, have to discontinue the medicine for good.

There's a thin line separating "deal with it" from "call your doctor."

Whereas last week I thought I could power-through, today I cried mercy. This morning's count was eight mouth sores, which makes me not want to eat, drink or talk! Darn it. I called my doctor, who gave me a few days off meds to let my mouth clear up with the help of some prescription goodies. Hopefully next week I can try it again.

I'm going to enjoy my weekend, pouty lip and all. Since I refuse to be a hermit, I will likely encounter strangers who ask what happened. There's no way to quickly explain how breast cancer caused my fat lip, so I need to come up with a better story or else I'll end up telling my life story to the checker at the grocery store. Right now I have three good options.

1. My two-year old Henry threw a ball and hit me in the face.
2. I just started taking a kick-boxing class.
3. You should see the other guy!

What do you think? Any suggestions?

Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.


Whatever it takes


Carrie Corey

For those of you who aren't familiar with the "whatever it takes" style of parenting, it's basically doing whatever it takes to keep everyone alive, well and happy. It's when you swore you would never give your child candy yet you're stashing suckers in your purse. I have (on more than one occasion) actually had to place a banana peel on the grocery store conveyer belt. Yep, I just paid for a banana peel, but it kept my child from screaming in the produce aisle...whatever it takes, right?

A friend with muscular dystrophy told me she often feels judged at her daughter's preschool when making her toddler walk inside the building, instead of carrying her like the other moms. When you have health issues – be it MD, cancer or something else – you have physical limitations other people don't understand. So what if you make your child walk into the school herself or teach your toddler how to climb into his own car seat.

Do whatever it takes to keep going.

And that includes ignoring guilt about not being the perfect parent and nasty looks from people who think such a creature exists. As a wife and mom living with cancer, I have started applying the whatever it takes theory to other areas of my life as well. While a "normal person" might say he/she has a lot on their plate, some of us have plates the size of a turkey platter. My day to day can be pretty heavy, so I give myself a pass on the little things like laundry to fold or dishes to wash.

I went in for my last PET of the year, and while overall I am still doing well, my cancer is starting to resist my current medication. Which means a new drug (but not back in the chemo chair yet!) and surgery. Instead of thinking about the big picture of what this means or the number of medications I haven't crossed off the list yet, I keep my sanity by taking the tactical approach. After all, I am a list maker.

1. New drugs? Researching new side effects.
2. Surgery? Scheduled as soon as possible.
3. Two week without driving? Time for a long visit from Mom.
4. Six weeks without lifting my 2-year old? Teaching Henry how to climb in and out of the car seat

Let's do this thing. I'll do whatever it takes to keep everyone alive, well and happy...including me.


Surrogacy: Becoming a parent after cancer


Jennifer Nassar
In 2010, Lindsay and Tony Giannobile returned from a vacation in Italy, their last "hurrah" before starting a family, but the life-changing news they received wasn't what they were planning for.

At 28 years old, Lindsay received a diagnosis of stage 3 HER2-positive breast cancer. Listening to Lindsay talk about her struggles and determination to not let a cancer diagnosis stop her from becoming a mother, I was inspired. Her story could give other cancer patients and survivors hope of having or continuing to have a family.

"It was our dream to have a family," Lindsay says. Unfortunately, like many other young adults with a cancer diagnosis, Lindsay learned infertility was a risk with her treatment.

From what I've learned, not all patients are given upfront information about potential fertility risks before therapy. If I had treatment and learned, after it was too late, that I could've done something to be able to have children of my own one day, I would feel denied the right and ability to have biological children.

With chemotherapy, the possibility of infertility may depend on age, type of drug and drug dose. Ifosfamide, chlorambucil and cyclophosphamide are a few drugs that can damage eggs. High doses of radiation therapy can also lead to premature menopause by destroying eggs in the ovaries. Even radiation not aimed at the reproductive organs can still cause damage by bouncing rays inside the body. Several options are available for women who want to plan for a family after treatment, including egg or embryo freezing, using an egg donor, surrogacy and adoption, to name a few.

[Read "What to Expect When You're Not Expecting"]

The couple chose to freeze embryos before Lindsay started chemotherapy in late 2010 with the hope that she might be able to carry them after her year-long treatment of chemotherapy, radiation and surgery.

"We're very blessed that I had babies on the brain," she says. "That really was our only chance at the time."

The Giannobiles' plan for Lindsay to complete therapy, be finished with cancer and have a child was derailed when, a year after starting treatment, she learned the cancer had spread to her bones. The cancer, now stage 4, ultimately means she will stay on treatment indefinitely.

"Tony kept saying, 'God will make it so that we can be parents'," Lindsay says, but at this point, the couple had very few options of starting a family. Surrogacy was their first choice. They would have tried adoption, but Lindsay was told by multiple sources that they wouldn't qualify to be adoptive parents because of her cancer diagnosis. "We wanted our biological baby, and we believed that God's plan for us was just that since we were able to freeze embryos successfully," she says.

Their first order of business: find a surrogate.

Lindsay and Tony reached out to surrogacy agencies and sent emails to friends and family, asking if they knew anyone who might be willing to carry their child.

The Giannobiles received a response from Kristen Keighley, who she met during treatment.

"She said, 'I can do this, I want to do this for you,'" Lindsay says. "We got things started from there."

Lindsay and Tony Giannobile with their surrogate, Kristen Keighley

Surrogacy is one of the most expensive options for women unable to conceive. It can cost anywhere from $10,000 to $100,000, which includes doctor appointments, embryo transfer, surrogate compensation and legal fees. Most costs are not covered by health insurance.

[Read "The Price of Parenthood"]

To help them finance the surrogacy, friends of the couple held fundraisers. Lindsay's friend, Matt Russo, raised $1,000 for every mile he ran in a Columbus, Ohio, marathon. The final total neared $30,000.

On May 15, Lindsay and Tony's son, Rocco, was born via caesarean section. Lindsay says words can't describe the experience of watching Rocco come into the world. It is something she and Tony will always "vividly remember."

Tony and Lindsay Giannobile holding their son, Rocco

"To think our baby was frozen for about two years, then developed in someone else's body is just an absolute miracle," she says.

Lindsay describes their surrogate as a "selfless, selfless person." Kristen, a single mom, works and attends school full-time. "And to add one more thing to her plate, she carried our child."

Lindsay isn't ashamed of her decision to use a surrogate and feels surrogacy isn't talked about enough.

"I think our generation has gotten better with talking about cancer, but surrogacy is a different story."

Lindsay encourages others to not give up on the dreams they had before cancer. "Look at the things that you thought your life would consist of before cancer" she says. "I think that is so important."

For more information on requirements, costs and support for surrogacy, here are a few resources:

> All About Surrogacy
> Circle Surrogacy
> The National Infertility Association

You can read more about family planning with cancer in CURE's Summer issue article, "Managing Expectations."


CURE magazine - week one


Jennifer Nassar
I've always known that cancer is the growth of abnormal cells, can spread from its primary site, consists of different types and stages and that it's sometimes called the silent killer.

If you're like me, you've always thought to yourself, "Knowing all of this gives me a good idea of what cancer is." After my first week interning at CURE, all I can do is laugh at myself.

By the way, I'm Jennifer. I'm the editorial intern at CURE for the summer. I'm very excited to be working with such an outstanding group of individuals, but I'll let you in on a little secret. I really don't know what I'm doing.

At first, I felt a bit out of place; like I didn't belong here because I had no idea what anybody was talking about. Yes, it was overwhelming. I'm working at a publication for cancer patients, survivors, caregivers and families, and don't have much background in cancer. My interest in CURE came from writing for my college newspaper, The Daily Mississippian at the University of Mississippi. As an editor/reporter, I often wrote stories of how people overcame unwanted obstacles or burdens. I've always enjoyed telling the stories of others, and appreciated the lessons that came out of it.

But a comment from Lindsay Ray, the assistant editor at CURE, made me feel that my lack of knowledge wasn't necessarily a bad thing, and that it somehow connects me to our readers.

"Think of yourself as a newly diagnosed patient," she told me. "Most of them don't know anything about their cancer at first."

True. It was definitely a lot to take in on Day One. I was scared and intimidated listening to the editorial staff on my first day. I'm willing to bet it's scary to hear that you have cancer. If something didn't make sense to me, I would look it up. If you're diagnosed with something you're unfamiliar with, you're very likely to do your research on it.

Obviously, learning about cancer will not happen overnight. It will not happen over a week. It probably won't even happen by the end of my internship in August. No, scratch that, it for sure won't happen then.

The beginning of a journey can be many things. It can be scary, overwhelming, exciting or anything else. There are sometimes when we're unprepared for it, whether it's a new job or a new diagnosis. The rest of the journey is up to us, and we can only control how we handle it.

So please, what do I need to know to help you?

Jennifer Nassar, a journalism graduate of Ole Miss, is a summer editorial intern with CURE. Jennifer enters graduate school at the University of North Texas this August.


Six tools you need to reinvent yourself beyond cancer


Debbie Woodbury

"Life isn't about finding yourself. Life is about creating yourself." George Bernard Shaw

When cancer happens to us it's common to feel completely out of control. We go from our "normal" lives to something we reluctantly call the "new normal." The problem is that it doesn't feel normal at all because we are changed suddenly and forever.

I got a glimpse into the emotional trauma caused by sudden, catastrophic change as a trial attorney. Almost every accident victim I spoke with was overwhelmed by it, "I was going along fine and, all of a sudden, my entire life changed completely in a split second." I didn't relate then, but years later when I heard "You have cancer," I completely got it.

In truth, we feel out of control as we rocket through the diagnostic and treatment phases of cancer because we have little control. This is the nature of the beast. For the first six and a half months of my cancer journey (from mammogram to mastectomy), I white knuckled every decision, test, doctor's appointment and surgery.

It was only after my mastectomy that things began to slow down enough for me to begin the clean-up work that follows every emotional hurricane. For me, healing required accepting change and working through issues such as body image, mortality, stress, loss, loneliness and anger. As I did so I discovered the creative power of reinventing myself.

Although I had no control over the many sudden, traumatic changes cancer dealt me, when it comes to reinventing me, I have a lot of input. I can find little ways every day to live with mindful awareness. I can practice yoga and let uplifted feet lead to an uplifted heart. I can make small, healthy changes in my diet. I can savor moments of gratitude and cherish every opportunity to give back.

The following are the six tools you need to find your creative power of reinvention:

1. Resilience: The reason we're all still here and upright is because we're resilient. Nurture your resilience on a daily basis. (Read "Six Truths I've Learned About Resilience.")

2. Grief: No one gets hit by a bus and reinvents herself the next day. Grieving is the process of coming to accept the "new normal." It's painful, but it's a vital step in reinventing yourself.

3. Gratitude: I firmly believe that gratitude is the single most important building block of reinvention. Without gratitude, there is no hope. With gratitude, anything is possible because we know how very blessed we truly already are.

4. Support: Speak up, tell your story, share! If you want to find support you have to communicate. The beauty of finding others who "get it" is the strength they give you to reinvent yourself.

5. Small Successes: Make small stabs at reinvention to achieve small successes. As you do, you get bolder and can stomach more risk. You can do it!

6. Carefully Chosen Words: Reinvention is self-inflicted change and change is scary. That's why, even when you're excited to reinvent yourself, you're also anxious. Instead of scaring yourself unnecessarily, why not change your words and thus your approach. If you break out in a sweat every time you say, "I'm going back to work," try saying, "I'm excited to find new opportunities to (fill in the blank.)"

Reinvention also takes time and, most importantly, permission. We can reinvent ourselves and take back control over the "new normal." We can take what we've learned from our struggles and use our creative power to reinvent ourselves. When we decide "WhereWeGoNow," our reinvented selves create inspired healing, wellness and live out loud joy!

Debbie Woodbury is the author and founder of WhereWeGoNow, an interactive community for cancer survivors creating inspired healing, wellness and live out loud joy. Debbie is a blogger at The Huffington Post, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathways Women's Cancer Teaching Project, a wife and mother, and a former very stressed out lawyer. You can also find Debbie on Twitter and Facebook.


A summer with CURE


When Jon Garinn, the managing editor of CURE, had asked me why I was interested in the health industry, I wasn't sure what to say. I was sitting in the conference room with him and another editor, with two additional editors on a conference call. This was my interview.

I wasn't sure what to say. Except for that my dad is a physician and he hoped that I would be one myself one day. I even went to a school well-known for its pre-med program (I was not a science major). At that point I was pretty sure I lost my chance at this internship. Yet somehow it worked out and as I conclude my internship here at CURE, I can say that I am confidently able to move forward with my career in journalism. And I would not have obtained this sense of confidence without my experience here at CURE.

With no science background, I had taken a plunge into the world of cancer. All of a sudden I had to learn how to distinguish between generic and brand names of drugs (this made dinner fun with dad), and I had to research whether chickpeas are a soy-based food, because they may contain potential cancer-fighting properties.

The fact-checking process proved to be suffocating at times, yet Jon was kind enough to guide me along. It is the investigation process of journalism and is especially important in topics dealing with someone's well-being.

Jon always reminded me that CURE magazine is advocacy journalism, meaning they keep the reader informed on everything cancer--from new drugs passed by the FDA to studies showing chocolate potentially prevented colon cancer. And they achieve this through story telling.

Simply put, cancer is not easy to understand. The world of cancer is convoluted and overwhelming. CURE's goal is to make it less so, and more human and tolerable. It puts the humanity in science.

With my final year of graduate school about to start, I can't help but wonder where I will eventually land. There will be different roads I will come across, and I'm fortunate to have had a chance with CURE. It's a house full of passionate people who are deeply committed to their readers, and I will miss them very much!

Sahar Mehdi, a journalism graduate student at the University of North Texas, is a summer editorial intern with CURE.


Making progress in pancreatic cancer


You can feel the momentum building in the pancreatic cancer scientific community and it's an exciting time in the movement to defeat pancreatic cancer. For the first time, the American Association for Cancer Research (AACR) hosted a Special Conference devoted to the disease, entitled Pancreatic Cancer: Progress and Challenges. The meeting took place June 18-21, 2012, in Lake Tahoe, Nevada.

Pancreatic cancer is the fourth leading cause of cancer death in the US. The five-year relative survival rate is a mere six percent, due to inadequate diagnostic tools and ineffective treatment options. Historically, the disease has been woefully underfunded and understudied.

A major goal of the Pancreatic Cancer Action Network is to double the survival rate for pancreatic cancer by 2020. A critical part of this effort is to advance research in the field, by bringing in more scientists to study the disease, increasing and improving the results generated and creating more opportunities for researchers to work together. The combination of more research, more researchers and more collaboration will accelerate progress towards a better understanding of the disease, and ultimately lead to improved clinical outcomes.

In the interest of convening the scientific community, the Pancreatic Cancer Action Network proudly served as the lead supporter of this AACR Pancreatic Cancer Special Conference.

The AACR describes their special conferences as presenting "unique opportunities to interact with the world's leading experts and discuss the latest findings in rapidly developing areas of cancer research." Indeed, this meeting featured a variety of attendees, including world renowned authorities in the field, early-career faculty members just launching their research endeavors, trainees at the graduate student and postdoctoral fellowship level, and survivors and community members hungry for progress in this devastating disease.

Excitingly, over 450 people registered for this meeting. In stark contrast, a Think Tank that took place in late 1999 involved only 60 scientists. It is exciting to witness the increased interest by the scientific community in this disease. A recurring theme throughout the meeting in Lake Tahoe was comments marveling at the "quantity" and "quality" of science being presented.

As testament to the caliber of research, the AACR issued 12 press releases related to results announced at the meeting. There was also a press conference where four of the scientific presentations were featured. The Pancreatic Cancer Action Network's summaries of the meeting highlights with links to the AACR press releases can be found here.

The broad range of topics discussed at the meeting ranged from work conducted towards improving the diagnosis of pancreatic cancer, potential ways to prevent the disease, understanding progression and spread, and explaining the role of the complex types of tissue and cells that typically surround pancreatic tumors.

Overall, this AACR Special Conference was a critical milestone for the pancreatic cancer research community. Each session was jam-packed with both attendees and information. Because of our enhanced knowledge about the basic scientific features of pancreatic cancer, we are poised to translate these findings into clinical benefit for patients. We will continue to work closely with the research community and intensify our efforts to meet our goal of doubling the survival rate of pancreatic cancer by the year 2020.

Julie Fleshman, JD, MBA, is the president and CEO of the Pancreatic Cancer Action Network. You can learn more at


When spit doesn’t happen: Dry mouth risks and remedies


CURE invited Dennis M. Abbott, DDS, founder and CEO of Dental Oncology Professionals of North Texas, to explain the risks and management of dry mouth during cancer treatment.

"Sometimes my mouth gets so dry that I wake up with my tongue stuck to the roof of my mouth. It's been so bad that I've had to get a drink of water to get it unstuck!" - B.D., Mesquite, TX

Dry mouth. Xerostomia. Hyposalivation. Cotton mouth. Call it what you will...but very few people really understand what a severely dry mouth is all about better than someone battling cancer.

Dry mouth is a common unwanted companion for many oncology treatments. For patients undergoing chemotherapy, xerostomia is a pharmacological side effect of the cytotoxic drugs used to combat the cancer. In head and neck radiation therapy, hyposalivation is a direct effect of ionizing radiation administration on the salivary glands. At best, dry mouth is annoying; but in severe cases, the potential effects of xerostomia on teeth and soft tissues of the mouth can be devastating for years.

The story begins with spit, or saliva. Under normal conditions, the average human produces about one liter of saliva per day. Saliva functions as a protector of the oral cavity. It keeps the tissue moist. It neutralizes the acidic by-products of intraoral bacteria. It begins the digestion process, by moistening what we eat and breaking down starchy foods. It lubricates the moving parts of the mouth allowing us to smile and speak. In short, saliva is a big deal...and it is greatly missed when it's gone!

A loss of saliva can lead to a host of problems: difficulty chewing or swallowing; changes in taste; nutritional compromise; intolerance to oral medications, such as pills and capsules; increased susceptibility to dental decay; higher risk for oral infections; increased likelihood of injury to oral tissues; and an inability to wear dentures or partials.

Often, patients find the consequences of dry mouth annoying; while sometimes, they can be devastating. Some may even become emotionally depressed after not being able to carry on with what had previously been daily routine activities such as eating and tasting food.

From a dental health perspective, severe dry mouth can be very damaging to the teeth and increase the risk of intraoral infections. Teeth in a dry mouth are especially susceptible to decay at the gum line. A cavity at this location can be especially problematic since decay does not have to travel far to infect the center of the tooth, leading to a dental abscess. Likewise, a patient with diminished saliva has an increased risk for intraoral bacterial, viral or fungal infections that can become a systemic health problem if the patient has mouth sores, as in mucositis.

The solution comes by first identifying the problem. Like many areas in medicine, there are several ways to manage dry mouth. A dental oncologist, a dentist that specializes in oral medicine as it relates to cancer care, can help decide which is right. Treatment can range from systemic medication to mouth rinses or topically applied intraoral gels. A neutral rinse can be made by combining 1/4 teaspoon salt, 1/4 teaspoon baking soda and 1 quart water. This simple mouth rinse can be used to moisturize the mouth by following the directions to swish and spit. Again, a dental oncologist can determine which method of management is best for you.

Fluoride is an essential element for management of dry mouth. Carrier trays for localized delivery of fluoride make it possible to get the tooth-strengthening gel right where it needs to be. Patients with dry mouth must commit to meticulous oral hygiene including brushing and flossing two to three times a day, regular use of prescription-strength fluoride, and professional dental cleanings at least once every three months. When dental restorations are required, the dentist can even choose a fluoridecontaining filling material.

Food choices often change when dry mouth is a factor. Frequent consumption of highly acidic foods should be avoided as this can be harmful to tooth enamel and increase the risk of decay. Foods that are high in sugar and sticky foods must also be controlled. When these foods are enjoyed, a proper dental hygiene regimen should immediately follow to minimize the time these damaging foods have contact with the teeth.

Understanding the risk and seeing dry mouth as more than just an inconvenience is a big part of the battle. Knowing there are healthcare professionals who understand the struggle and can help manage not only the xerostomia but also the treat any infection or pain that might arise should encourage patients facing dry mouth to ask questions and seek help. So, when spit doesn't your dentist or dental oncologist.

Dennis M. Abbott, DDS, is the founder and CEO of Dental Oncology Professionals of North Texas, an oral medicine practice dedicated to meeting the unique dental and oral health needs of patients battling cancer. In addition to private practice, he is a member of the dental oncology medical staff at Baylor Charles A. Sammons Cancer Center and Baylor University Medical Center in Dallas. Dr. Abbott has conducted studies focusing on bisphosphonate-related osteonecrosis of the jaw and xerostomia in patients with cancer.


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